Wednesday, December 23, 2009
A Look Back
It is absolutely astonishing to me all that these boys (my boys) have accomplished so far. Now they are both striding confidently towards 5 pounds if you can believe it. Their personalities and voices are starting to emerge. They look like normal babies . . . just a little smaller (but not much). When I go to the hospital the aprehension and anxiety are still there. . . wondering if I will get bad news of a setback, but it is in the backround preceded by anticipation and excitement of seeing my babies and getting to touch their soft skin or hold them against me.
Owen is heavier than Liam by less than an ounce for the first time in many many weigh ins. He is starting to get cheeks and an extra chin. He still doesn't completely fill out his preemie onsies, but is getting closer to moving into newborn clothes. Liam is a little shorter than Owen, so he looks a lot rounder. We call him our little cherub, becuase he's round and full of rolls and puckers his little mouth all the time. Liam is more of a true crier when he is upset, but in general much more laid back smiling in his sleep a lot. Owen grunts like one of the munchkins from the Lollipop Gang in The Wizard of Oz.
Both boys have started their physical and occupational therapy to help them learn the fetal position that full term babies have practiced in utero, but our boys came out so small that they didn't have to curl up in a flexed position at all so they like to arch their backs and get very "disorganized" easily. They can push out their arms and legs and flail around and then not know how to get everything back close to their bodies (normally my uterus would do this job for them). So we work with the therapists to teach them how to stay curled and start to soothe themselves by sucking on their fingers and clasping their hands. They love being "played" with, and it feels so good to get to "handle" my babies after 7 weeks of barely being able to touch them.
The best thing in the world is Kangaroo Care. Then I get to hold them one at a time skin to skin on my chest under my shirt. I feel their heartbeats, and breaths, and they nuzzle their faces into me. I could do that all day, and encourage everyone to "wear" their baby when they are newborns!
Both of the boys are well over 4 pounds and in open air cribs (no more plastic cages!!!) Now we can hear them all the time, and they get to wear clothes and hats like regular babies:-)
I know that Owen and Liam are not yet out of the woods and that they are still very fragile preemies, but I can't help but be excited about bringing them home in about a month. Liam still needs to be "put back together", and that is not an easy surgery by any means, but I remain hopeful and continue to pray every minute that for all he's been through so far he gets a break when it comes to this surgery and it goes smoothly with out any complications, and without too much bowel having to be removed. Owen struggles intermittently with reflux which is very common in all babies and especially in preemies (at 34 weeks gestation he still wouldn't be eating yet), but I hope that he will be able to stay on full feeds and not have to resort again to IV nutrition.
Both boys are much more awake now, looking around at their worlds and locking eyes with me or their Dad. I can't tell yet what color their eyes are going to be, probably brown, but right now they are a deep saphire blue/grey. They are growing up right before my eyes.
Owen is heavier than Liam by less than an ounce for the first time in many many weigh ins. He is starting to get cheeks and an extra chin. He still doesn't completely fill out his preemie onsies, but is getting closer to moving into newborn clothes. Liam is a little shorter than Owen, so he looks a lot rounder. We call him our little cherub, becuase he's round and full of rolls and puckers his little mouth all the time. Liam is more of a true crier when he is upset, but in general much more laid back smiling in his sleep a lot. Owen grunts like one of the munchkins from the Lollipop Gang in The Wizard of Oz.
Both boys have started their physical and occupational therapy to help them learn the fetal position that full term babies have practiced in utero, but our boys came out so small that they didn't have to curl up in a flexed position at all so they like to arch their backs and get very "disorganized" easily. They can push out their arms and legs and flail around and then not know how to get everything back close to their bodies (normally my uterus would do this job for them). So we work with the therapists to teach them how to stay curled and start to soothe themselves by sucking on their fingers and clasping their hands. They love being "played" with, and it feels so good to get to "handle" my babies after 7 weeks of barely being able to touch them.
The best thing in the world is Kangaroo Care. Then I get to hold them one at a time skin to skin on my chest under my shirt. I feel their heartbeats, and breaths, and they nuzzle their faces into me. I could do that all day, and encourage everyone to "wear" their baby when they are newborns!
Both of the boys are well over 4 pounds and in open air cribs (no more plastic cages!!!) Now we can hear them all the time, and they get to wear clothes and hats like regular babies:-)
I know that Owen and Liam are not yet out of the woods and that they are still very fragile preemies, but I can't help but be excited about bringing them home in about a month. Liam still needs to be "put back together", and that is not an easy surgery by any means, but I remain hopeful and continue to pray every minute that for all he's been through so far he gets a break when it comes to this surgery and it goes smoothly with out any complications, and without too much bowel having to be removed. Owen struggles intermittently with reflux which is very common in all babies and especially in preemies (at 34 weeks gestation he still wouldn't be eating yet), but I hope that he will be able to stay on full feeds and not have to resort again to IV nutrition.
Both boys are much more awake now, looking around at their worlds and locking eyes with me or their Dad. I can't tell yet what color their eyes are going to be, probably brown, but right now they are a deep saphire blue/grey. They are growing up right before my eyes.
More Milestones
Owen and Liam are getting bigger and bigger. They both have their feeding tubes in their noses now and continue to breathe on their own. It’s neat to see their mouths free of any tubes and I’m sure they’re thankful for that feeling too! They are both on the high-flow nasal canulas, but their rates have been weaned down a bit in the last week. Martina got to give Owen his first tub bath on Tuesday during the day (I was unable to be there to take pictures because I was at work) which was really cool because they take all the leads off (heart rate and respiratory rate sensors) so she got to see him truly naked for the very first time ever - no wires or lines or diapers! Last Saturday Martina got to give Liam his very first bath as well – albeit a sponge bath – he enjoyed it once it got going and he especially liked having his hair washed. I missed that as well but Martina said he was smiling the whole time she rubbed his scalp with the baby shampoo and that he really liked that part. We are both consistently kangarooing both boys nightly (we alternate nights with each boy) and Martina usually gets to hold one of them on her day visits. Liam continues to lead the way with his weight – he’s up to 1,682 grams last night (3 lb, 11 oz) - and he still continues to have a little edema but I think that he will struggle with that (not a big deal) while he has that stoma, but they are getting more and more like full term babies, staying awake more, and crying now, and smiling. Liam’s feeding has also steadily increased from 1 cc every 12 hours to 1 every 6 hours, then 1 every 4 hours, then 1 every 3 hours and now he’s on continuous feed of 1.5 cc’s every hour. It infuses very slowly but is continuous 24/7 in hopes that it will stimulate his digestive system to continue to wake up and digest the food more and more and to stimulate the peristaltic activity (squeezing of the intestines from top to bottom in sequential order to push food from the stomach all way to his rectum) that lay dormant for the first 6 weeks of his life. Owen weighed in last night at about 1,580 grams if I remember correctly (3 lb, 8 oz) but he is getting really tall (he’s about two inches longer than Liam even though he weighs 100 grams or so less). We want him to slow down on his length and get a little fatter, but he is eating like a champ at almost 1 ounce every 3 hours (he gets 27 cc’s of 26-calorie-per-ounce fortified breast milk) so he's doing well. (Breast milk is naturally 20 calories per ounce so they fortify it with calorie enhancers to bulk up preemies so he slowly gets titrated up on his calorie enhancer and he’s up to 26 calories per ounce now.) It’s hard to catch anything on camera but them sleeping but we’ll keep trying!
That’s all for now.
love,
Eric
That’s all for now.
love,
Eric
Breathing Like Big Boys
Just a quick update – the boys are having another great day! Liam did not pull his breathing tube out all night so at 8 AM this morning, they decided he was ready and the doctors extubated him! He has since been doing really well and is breathing all on his own just like his brother (with the help of a high-flow nasal cannula). Both boys are now free of their ventilators! I wasn’t able to be with Martina at the hospital this morning, but she got to kangaroo care with Owen for the first time (she said he did GREAT) and while she was doing that, his isolette was changed out with an isolette for less serious babies so that’s another GREAT sign and a step in the right direction! Last night, Martina got to hold Owen without his ventilator so he could actually make sounds. He was awake for quite a bit of the holding and although he didn’t cry once (which in some crazy way I’m eagerly looking forward to simply because I can’t wait to hear his little voice) but he did make all kinds of cooing sounds with his mom and it was so great to finally hear him for the first time – after 49 days!
That’s all for now.
Love,
Eric
That’s all for now.
Love,
Eric
From Mom to Dad
Here is a text I found from myself to Eric on the day Owen's pic line was removed.
Boys are good I am pumping then going to hold owen before his round. Sue said I can do kangaroo care with liam tonite if she is not flexed down. Owen is at a rate of 28 and liam is at 26, owen's pressure is down too. They started adding calories and he is tolerating it well may move up to 24 from 22 tonite. Pic line is out, he is line free!! Also if he self extubates they will let him try on his own! (I told him to leave that tube the f alone!). The echo is not back on liam yet, no bradies since the one documented by kim, still doing well with his Q6 feeds both have gases at 5 I think. Dr McGill said liam is doing great, goal is to extubate and let him grow to 2.5K and then go in and fix him up. I think that is it for now I will call you after rounds
Boys are good I am pumping then going to hold owen before his round. Sue said I can do kangaroo care with liam tonite if she is not flexed down. Owen is at a rate of 28 and liam is at 26, owen's pressure is down too. They started adding calories and he is tolerating it well may move up to 24 from 22 tonite. Pic line is out, he is line free!! Also if he self extubates they will let him try on his own! (I told him to leave that tube the f alone!). The echo is not back on liam yet, no bradies since the one documented by kim, still doing well with his Q6 feeds both have gases at 5 I think. Dr McGill said liam is doing great, goal is to extubate and let him grow to 2.5K and then go in and fix him up. I think that is it for now I will call you after rounds
Where do I begin . . . . how about at the beginning
Subject: Update on Martina
All-
Sorry for the general email to all but its the only way to reach everyone.
Martina was re-admitted to St Joes last Wed night with painful contractions. All tests were okay at the time but doctors could not identify reasons for contractions. She was eventually put on a magnesium sulfate drip which worked very well to reduce the contractions but its a nasty drug that makes you feel unsteady, groggy, nauseas, headache, feel on fire, etc. After two days they tried to step down the dose but contractions returned. After another few days at the higher dose (today) they tried again to step down and contractions returned. Fear at this point is infection that may have set in prior to the cerclage but that often goes undetected for 2-4 weeks.
This afternoon, the doctors decided to do an amniocentisis (sp?) to rule out or in an infection. The two results were mixed. The glucose test was very low which indicates an infection as the bacteria feed on the glucose in the amniotic sac however the Gramm test was negative for bacteria present. The doctor believes this is a false negative as the prophylactic antibiotics she's been on has probably masked the infection and held it at bay.
The plan now is to take out the cerclage (which has now been done) and see what happens. If contractions ramp up and cervical changes occur, delivery will occur immediately thereafter. If not, she will try to stay pregnant as long as possible. Its not unheard of for that to occur, but highly unlikely.
As you all can imagine, its way too early for these babies to arrive. Martina has carried them past the critical 24 week point, but we're now in a window that might be even worse, quite frankly. The neonatologist spoke with us on Thur and very bluntly explained the procedure from here if the babies arrive and how it changes the longer we can go. Martina is 24 weeks and 4 days today which means delivery today results in a 50% survival rate and of those that survive, 50% have normal brain function. If she can make it to 28 weeks for example, those figures improve to 80% compared to 97% for full term babies. She did successfully get the two doses of steroid injections on Sat and Sun which speeds up the development of babies' lungs, intestines, and brain in preparation of preterm delivery.
We will try as best as possible to keep you posted as we go along. Your prayers as always are greatly appreciated.
Regards,
Eric
Exam at noon revealed the cervix is still fairly well closed but very thinned out and lots of pressure behind it so decision is made. C-section is being done in a few minutes. Growth ultrasound this morning pegged A at 1 lb, 8 oz and B at 1 lb, 9 oz. We will pray for the best. Will let you know when we know more.
Eric
Our boys have arrived!
Owen James Damko was born at 12:52 pm, weighed 1 lb, 6 oz, and measured 12.5 inches.
Liam Frederic Damko was born at 12:54 pm, weighed 1 lb, 5.4 oz, and measured 12.75 inches.
Although they are here and they are fighters, we are a long way from being out of the woods. They are in the NICU where they will stay for the next 12-16 weeks. The first 24-48 hours tends to be a bit of a honeymoon period and any complications that may arise would present shortly after that window. For that reason, the doctors tell us to tread cautiously until these boys are 7-10 days old. At approx 7 days they will get their first ultrasound brain scan that will reveal the number and severity of any brain hemorrhages, which is what causes any permanent developmental problems so we will continue to pray for good results. Both boys are currently experiencing some blood pressure problems but are being treated with meds for that. The medicine is very slowly titrated so that they very slowly bring their blood pressure up. Moving too quickly can cause brain hemorrhaging. Otherwise, the boys are behaving and responding to all treatments as they expect 24-week preemies to do. They are on ventilators to assist them with breathing and have catheters through their bellybuttons for feeding and medicine. All food will come through the catheter until their stomachs are ready for food, at which time they will start receiving breast milk through a feeding tube into the stomach until they are old enough to coordinate their suck/swallow motor skills and then they can begin regular feeding.
Martina is settled into her room in the antenatal wing of the hospital. She will be here for 3 days or so. She is very groggy this evening but has had a chance to meet her boys. We have not held them and have no idea when we will get to do that for the first time. She says she welcomes calls to her cell phone (602-527-1297) but may not feel like talking before tomorrow.
More updates to follow and possibly even a few pics.
Love,
Eric
We had a bit of setback today with Liam but hopefully nothing major. We learned around 11:00 AM that the doctors discovered open air in his abdomen. Further evaluation and x-ray revealed that he had suffered a perforation of his intestine. Since birth, he has and continues to receive all nutrients through the catheter that was inserted into the vein of his umbilical cord so the doctors believe it was a spontaneous perforation opposed to one that occurs as a result of feeding. It apparently is not a terribly uncommon complication for babies of his age, but is concerning nonetheless because of the risk of infection. The NICU called in a neonatal surgeon that we met with who explained the procedure that was to be done. The surgeon performed a short procedure that involved a small incision on Liam's lower right side of his abdomen (similar location to an appendectomy). Once inside, the surgeon said there was a pretty sizeable amount of stool and other infected material that he thoroughly flushed out and irrigated and then placed a drain in the incision that will remain for the next few weeks to continue to drain the area. The actual perforation is not treated in babies of his size in this initial procedure. Once the loose stools are removed from the belly and the antibiotics are introduced, the doctors wait to see if the hole in the bowel will heal on its own since an intrusive corrective surgery at his current size just causes more problems than it solves. Babies that undergo this procedure have one of three outcomes: 1) Many will heal and close the bowel perforation on their own, 2) others will not heal and will need a more intrusive surgery in the future to remove the section of perforated bowel, and 3) still others will heal but will get scar tissue that results in a stricture in that area of the bowel which inhibits the progression of food through the bowels which also results in a more intrusive surgery in the future to remove the section of bowel that has the stricture. We will continue to hope that Liam will fall into group 1.
The procedure was very short in duration and was done around 12:15 PM and we're comforted that it was not deemed severe enough to perform in the operating room, but rather, it was done bedside in the NICU. Liam did very well and is resting comfortably at this time and will probably be sleepy and disoriented for the rest of the day due to the anesthetics that he received and the pain meds. They have now added an additional antibiotic to his other meds to cover some of the possible other infections that he may be fighting that aren't covered by the other antibiotics that he's on. He also will be receiving a transfusion of blood platelets today as his count was low (presumably) due to the infection in his abdomen. He also now has an additional line that runs along side his breathing tube but runs all the way down into his stomach. That tube has a light amount of suction on it so that any fluid that ends up in his stomach over the next two weeks while healing will be sucked out before it can make its way down into the bowels with the goal being to not introduce any new matter into the bowels while the bowels are still healing and the risk of stools leaking into the abdomen remains. The main fear at this point is the risk of infection in the bowels and the abdomen so we will continue to hope that it will heal on its own and the antibiotics will work. Due to the procedure, he will not start feeding for a minimum of two weeks so he will continue to receive his nutrients through the belly button catheter. Other than that, he has been weaned off of this blood pressure meds and the insulin drip so we will hope that when he recovers from this and is ready to eat, they will feed him more and more so that he can catch up with his brother.
Speaking of his brother, Owen is doing quite well. He was moved into Liam's pod last night so now they are neighbors rather than being on opposite ends of the NICU. This is a great sign because we were initially told they would not be pod mates until they were stabilized enough so as to no not over burden one pod team of medics with two critical babies so the fact that they are pod mates now means that they have crossed that bridge! Owen is also off of all of his blood pressure meds and is very close to getting his breathing tube out for the second time. The hesitation is that they don't want to remove it only to re-intibate him in the future. His oxygen concentration that he's getting is 21% which is equal to room air so it should be only a matter of a short time before he gets the tube out. His ventilator is on the lowest setting possible and he's doing most of the breathing on his own. He will probably start receiving breastmilk as early as tonight through a feeding tube into his stomach and will slowly get weaned off of the catheter-fed nutrients and start taking 100% breastmilk within a few days/weeks.
More updates to follow. Gotta run -we're heading over to see the boys now.
Eric
Nothing much has changed today other than Martina did get discharged. I know its best for her to be at home where she will rest and recover better and get stronger so that she can be even stronger for her babies, but is proving far difficult for her to be such a ways away versus just down the hall. We will keep pushing through this. The boys are stabilized today and their tests are improving so they're being ratcheted down little by little from their ventilators and other meds. Both will have some additional testing tomorrow including chest ultrasounds to scan for any other undiagnosed or other common abnormalities that occur in babies of their gestational age. We will keep you posted.
Regards,
Eric
We had a good day today. Both boys have stabilized on their ventilators and other meds and were even continually weaned a bit more on their ventilators today. Liam is doing well on his recovery - the drain is continuing to do its job and he did not need any pain meds today as he did not exhibit any signs that he was in pain. Both received echo cardio grams today on their hearts to check for the duct issue that is common with babies of their age. Results on those tests won't be available until tomorrow. If they are afflicted with that issue, the doctors will decide whether to do nothing (if small enough, these often close on their own) or to take corrective action. The corrective action will include two drugs that are administered in two courses of therapy. One is a powerful anti-inflammatory drug and the other is a steroid. Approx. 50% of those treated with the drugs end up closing as a result and the other 50% require a corrective surgery, but the doctors today informed us that it is a quite common procedure that is routine with consistently good outcomes. The side affects of the drug therapy are reduced blood flow to the digestive tract and kidneys and risk of infection. The infection risk and reduced blood flow to the digestive tract are not much of a worry to the doctors at this time since neither are eating yet (therefore not using their digestive tracts) and both are being treated with antibiotics prophylacticly. The reduced blood flow to the kidneys is closely monitored and other actions can be taken if it becomes necessary. We will cross that bridge when we come to it.
We also received word today that one of the two placentas did test positive for infection which at last gives us some closure as to what caused the pre-term labor. The doctors are unable to tell which placenta it was since both came out together with the birth of Liam. We assume it was Owen since his bag was the only one to be exposed through the cervix back in September when Martina was found to be a little bit dilated, but we'll never know for sure. Instead of a 7-day treatment of antibiotics, both will receive a 14-day course since its not known which one was infected.
That's all for now. We're heading back over to the hospital momentarily to see the boys again.
Regards,
Eric
Today was another uneventful day - which means it was a good day in the NICU! Both boys were weaned a bit more on their ventilators and are inching towards not needing them anymore. In fact, they may attempt to take Owen's out again as early as tomorrow, but no guarantees. The doctors are hesitant to do it until they're reasonably sure that they won't need to go back on it because continued re-intibation of the airway can cause damage and scarring. Both were fully weaned off of the hydrocortisone they were receiving (it was the last of the blood pressure meds they were receiving) and are both now on caffeine as it is a stimulant that will continue to reduce their apnea/bradycardia episodes that occur as a result of their immaturity (referred to in the NICU as the A's and B's). They both essentially forget to breathe from time to time (apnea) which results in their heart rate suddenly dropping (bradycardia) which is normal for them at their gestational age because their brains are not yet mature enough to tell the lungs to keep breathing and the heart to keep beating. It is a motor function that will eventually be hard-wired but until then the caffeine therapy is the route to take. Owen seems to have a lot of episodes of the A's and B's while on his right side so they took some additional chest scans today and can't seem to find anything abnormal. The scan confirmed that the breathing tube is well-placed in his lungs, but they did note that it runs down the right side of his airway so the suspicion is that it rubs or irritates him when he's on his right side.
Both boys' results of the echocardiograms came back today and revealed that Owen does not suffer from the open duct of the hear while Liam does. The specific condition is called Patent ductus arteriosus (PDA) and there is some great information about it that I found on www.wikipedia.com. As mentioned yesterday, it is very common for preemies to have this condition. All newborns arrive with the duct open and shortly after they begin to breathe using their lungs, the duct closes. Often time premature babies lack the strength and/or the lungs fail to emit enough of the chemical component required to close duct. Some will eventually close on their own, as is suspected with Owen. The doctors heard a murmur last week but the chest scan revealed that the duct has now closed. There is a chance that it could re-open, so we won't fully erase him from that category yet, but its closed for now and that's good. Liam was found to have a large duct; however, it is not currently affecting him so the doctors will not intervene for the time being. They now have a good baseline measurement based on yesterday's echocardiogram and as long as his lungs are not having a significant amounts of edema and he continues to be able to be weaned off of his respirator, they will just observe. They will periodically administer additional echocardiograms and if there is progress and signs that it is closing on its own, the medical staff will stand back and let nature work. If his tests get worse or he fails to improve on the ventilator, they will intervene and attempt the pharmacological approach and then resort to surgery if needed. We'll keep you updated on both.
We also found out today that both boys have inguinal hernias. Again, I found some good information about this condition at www.wikipedia.com. Owen has one on his left side and Liam and two - one on each side. Again, this is a common condition with babies of their age as their abdomens are so delicate and underdeveloped, that the intestines can push into places they are not supposed to be. They are monitored daily and are not painful to the boys, however, we were informed the only means for correction is surgery. The good news is that both remain "reduceable" which apparently means they can be pushed back into the abdomen. As long as they remain "reduceable" (again, they are monitored daily) the doctors will not correct them until they are a few months past their original due date as they like to operate on larger babies because its much easier. The doctor today said that the these are literally one of the easiest and most routine surgeries to perform on infants so we're optimistic that when the time comes for it, it will be an easy procedure. They also mentioned that if we're at all interested in circumcising the boys, the hernia surgery is the best time because the doctor can do it while they are already under anesthetic for the hernia surgery.
The catheters that currently run into and out of the boys' belly buttons need to be removed as they are only good for 7-10 days. In addition, the abdomen needs to heal and close and those lines need to be discontinued so both will have peripherally inserted central catheters (or PIC lines) placed. The PIC line is essentially an IV catheter that is inserted into the arm, leg, or foot that is then threaded all the way up into a larger vessel in the abdomen or chest. Through that line, the boys will receive all of their nutrients while waiting to eat through their stomachs as well as they will receive all medications and blood can be drawn from the lines. The lines are meant to be long-term lines (only need to be replaced every month or so) and avoids having to stick them with needles each time blood needs to be drawn and avoids needing a new IV line every three days since traditional IV lines are only good for 3-4 days. Owen is 0 for 2 and Liam is 0 for 1 at attempts to get PIC lines in, but they will try on Liam again tonight and Owen again tomorrow. It is common with babies as small as them to take several attempts before they get it in and properly placed. The line they tried in Owen's leg today got 75% of the way there before coiling up near his hip and having to be removed.
Lastly, the GREAT news to report tonight is that Owen has started eating! He had a new line running along his breathing tube today and we found out that it was his feeding tube! He got his first serving of breastmilk today and now he's being watched like a hawk! We are excited for this new step but not getting our hopes up too high just yet as feeding is very much touch and go with guys this age because their digestive systems just aren't set up yet for digesting food; however, the benefits of breastmilk far outweigh the risks of waiting and that is why they start as soon as they can. Its not uncommon for them to start and stop eating several times before their body figures out how to process the food so he may go on and off of feeding several times before staying on it for good. They say the 32-34 week mark of gestational age is where he should start to consistently stay on it. For now, he gets 1 mL every 12 hours - that's only a few drops! If he tolerates it, he'll get bumped up to 1 mL every 6 hours, then every 3 hours, and then he'll get more volume every 3 hours. In the meantime, while he adjusts to breastmilk, he will continue to get all necessary nutrients through the IV as Liam does. Liam will try eating in about two weeks if everything with his intestinal perforation goes as planned, which it still is.
That's all for today! More to follow tomorrow!
Regards,
Eric
I can't recall where things left off with the last update. Up until yesterday, the boys had been fairly stable with no material changes, which was good. They've both had some setbacks as of yesterday that have us worried, but we're still optimistic of a positive outcome.
Yesterday, Owen started struggling on his ventilator settings as the medical team continued to wean him off of it which prompted them to push it back up to higher settings. He continued to need the higher settings all day and was exhibiting signs of perhaps a return of the PDA (the heart duct that I mentioned in previous emails) as the nurses and doctors also could audibly hear a murmur when using a stethoscope. They ended up ordering another echocardiogram which was completed yesterday afternoon and we got the results last night that he does in fact have a small to moderate PDA. As mentioned previously, its not uncommon for the duct to open even after it has closed (which it had previously done in his case) but since its small to moderate, they'll monitor him for a few days to see if it will close up again on its own. If not, he'll most likely undergo the surgery to close the duct. The pharmaceutical option for him has or most likely will expire as the general rule of thumb that we've learned for use of the drugs available to close the duct are only for the first 10 days of life and even then there's an approx. 50% chance of success but there are side effects. We'll cross that bridge when we get there, but its probably best since he's now 15 days old to go ahead and do the surgery (if necessary) rather than attempt the drug route this far past the 10-day window and with only a 50% chance of success and the added risk of side effects. He's otherwise holding steady but he hasn't had breastmilk for the past 24 hours and most likely won't until the doctors decide what to do about the duct. He will continue to receive his nutrition from the IV in the meantime. His weight was up to 740 grams, or 1 lb, 10 oz and has held steady there for 36 hours or so.
Liam is having his own set of complications but has stabilized this morning. A few days ago the doctors noticed that his abdomen appears distended again and an x-ray revealed a mass of free air in there again. There is no new bowel perforation but the belief is that the existing perforation has probably not fully healed yet and air may be continuing to leak from the bowel into the abdomen. The drain that's been inserted is supposed to drain free air as well as any fluid, but it does not appear to be draining the air at this time. The good news is that the surgeon sees him daily and he's not concerned enough to do anything for now. The mass of air does not appear to be growing so that's a good sign and the hope from the surgeon is that the air will eventually make its way over to the drain and escape or will otherwise be absorbed by the body. The re-absorption route, if it goes that way, will just take a while since the body isn't meant to absorb air in that way. His vital signs with respect to the mass of air are steady so unless that changes, they won't do anything. If that changes, they may re-position the drain and try to get the air out. Yesterday, the nurses noted a growing rash on Liam's body that they are suspicious of. It appears to be a skin yeast infection which is not as common as the other complications he's faced, but is occasionally seen with babies of this age. They sent for two blood cultures last night to determine if the infection has also spread to his blood. Those will take 3 days to get results. In the meantime, the NICU has called in an Infectious Disease Specialist that will see Liam today and determine the best course of action. Even before seeing the specialist in person, the specialist has started him on a powerful dose of diflucan intravenously (an anti-fungal drug) and he is also being treated with an anti-fungal topical ointment. Its good to know that they proactively take these measures and they don't take infection lightly. I'm not sure how the treatment will change if the blood tests positive for the yeast infection, but we'll deal with that if and when the time comes. His respiratory rate and ventilator settings have required a lot adjustment overnight, the instability of which they believe is a result of the underlying yeast infection. The report this morning is that he's stabilized quite a bit and is resting. He continues to receive his nutrition from the IV and with the underlying gut condition, it may be 6 weeks before he's allowed his first breastmilk, but if that's the case, we'll catch him up! His weight was actually up bit yesterday to 640 grams which is his highest weight yet and slightly higher than his birth weight so that is good. He tends to be up and down on his weight, but its much better than the 500 grams that he weighed early last week.
That's it for now. We'll try to send out updates when we find out more.
Regards,
Eric
Today (and the last few) were pretty uneventful (and therefore pretty good ones) for the boys. There have been no changes to Owen's routine except that he is eating more and more and seems to be tolerating it well. He was increased today from 3 mL every 6 hours to 3 mL every 3 hours. If all goes well, he'll stay at 3-hour feedings and continue to increase his volume. His weight for the past 36 hours or so has held steady at 750 grams.
Liam is stabilized and doing well on his meds. The blood cultures for the yeast infection came back one positive and one negative on the third day of the culture growth. The infectious disease doctor is not sure if the positive test was a false positive that could have been contaminated when the specimen was collected as his skin was covered with the rash and even though they clean it very well before inserting the needle for the blood draw, there is a chance that it could have been contaminated nonetheless. He is not exhibiting the symptoms that he should have if his blood was infected so that's good and we'll see how the next round goes. As a result of the positive culture, two additional cultures were ordered but those results won't be available for another two days. Until then, he's being treated as if it has spread to his blood. The medication was changed from Diflucan to Amphotericin B - a much more potent but much more caustic anti-fungal. Once the doctors were able to determine the strain of fungus that he had, the therapy was adjusted to attack it with a more potent drug that will more efficiently attack the infection. Such is the case with the Amphotericin B. It is a switch that had to be made anyways because he did not appear to be getting better on the Diflucan. He wasn't getting worse, but was not improving. The Amphotericin B is very caustic as I mentioned, so it is administered via its own IV line and can have some severe side effects, but the benefits far outweigh the risks and the medical team monitors all of his vital organ functions very closely so that therapies can be adjusted if side effects become problems. If the fungus proves to be present in the blood, the next area of concern is whether it has spread to his spinal fluid and certain organs that harbor colonies of the fungus in little balls of fungus creatively referred to as "fungal balls" such as the kidneys and eyes. To that end, he will have a renal ultrasound tomorrow and an eye exam on Wednesday and possibly a spinal tap on Tuesday or Wednesday to check for the presence of the fungus (again, if the blood cultures come back positive). We were told that if the blood test comes back positive and even if the spinal fluid test comes back positive, it does not change the drug nor the dose of the treatment it only changes the length of time of the treatment. As a result of the positive blood culture he's had thus far, the PIC line was removed from his arm which is standard protocol when a blood infection is suspected. That will be replaced after 5 consecutive days of infection-free blood tests so until then, he's got a few regular IVs that have been inserted.
The drain in the belly fell out a few days ago as it was supposed to do (the surgeon had been pulling a little bit out each day) and an open fistula remains where a significant amount of stool and bile is continuing to drain from the abdomen. Although we were and still are quite alarmed and concerned by it, the surgeon sees him every morning and insists that it is healing as he wants it to so we continue to trust the doctors. The size of his distended belly has not changed, but true to the doctor's nonchalance, the belly is appearing better in color today and the fistula has reduced significantly to a barely noticeable hole in his belly. It is still draining bowel contents, but he also had his first good sized stool today in his diaper that came from the proper exit so there was cause for excitement that perhaps his bowels have or are healing and everything is going in the right direction. Only time will tell, but again, the doctors and nurses are not concerned so we try not to concern ourselves with it for now as well.
Lastly, Liam's weight was up to 710 grams today, only a few grams behind his brother so we were thrilled to see that. The nurse didn't want us to get too excited because she insists that its mostly edema resulting from the yeast infection that he's fighting and she pointed to his feet to show us the swelling but I honestly don't see much swelling at all (granted, I have an untrained eye) so we're optimistic that some or all of that weight gain may truly be legitimate weight gain!
Well ... that's it for now. More to follow as conditions change and as time permits!
Regards,
Eric
The last few days have been pretty good. Owen has continued to increase his feedings and is now at 7 mL every three hours and will keep increasing by 1 mL every 12 hours if he keeps tolerating it well! He's otherwise had no changes except that they continue to try to wean him off of his ventilator but the PDA prevents them from making big jumps - the thought and hope still is that he'll close that duct on his own at some point. If surgery is opted for, they prefer not to do it until he gets to between 2 and 2.5 lbs. His weight is up to 830 grams or 1 lb, 13 oz now so he's making progress.
Liam is responding well to the Amphotericin B therapy so we'll keep praying for continued success there. His second round of blood cultures both remained negative as of 9 PM or so last night which was 75 hours. They won't give him the 'all clear' until he's reached 5 days of negative blood cultures so we'll keep chugging along. His skin has completed cleared up so that's a good sign. His brain ultrasound on Monday also tested negative for meningitis (which was the concern with the yeast colonizing in his body) and the echocardiogram and renal scans also tested negative for colonization in them. He has an eye exam today that will show if there is any colonization in his eyes. Lastly, they may or may not perform a spinal tap this week to test whether the infection got as deep as his spinal fluid, but I believe the need for that test will be determined by the blood cultures and the other exams he's undergoing, but I'm not certain. His weight is up slightly to 720 grams so that's good too - every little bit helps. The hole in his belly has almost completely healed over although the efficacy of the procedure won't be known for some time. The doctors say one of three things will happen: 1) he'll heal and everything will start passing through the way it supposed to and all will be good; 2) it won't heal and an abscess will form under the skin and another procedure - possibly another insertion of a drain or a more invasive procedure - will have to be performed; or 3) he will heal with a stricture in the intestine that prevents food/waste from passing through as necessary which will result in an invasive procedure to remove the stricture from the intestine and re-connect everything.
We were there for rounds last night and spoke a bit with the neonatologist and he was emphatic about the fact that the enemy to both boys at this point continues to be infection so we will continue to hope and pray that they navigate those waters and continue to get bigger and stronger and get their IVs and other lines out as soon as possible - Owen will get his out sooner than Liam if he continues to progress as he has because the lines and the tubes are the greatest risk for infection that they will face.
Regards,
Eric
The boys have had another good 24 hours. Owen is continuing to have good feedings and had his first 10 mL feeding today at 11:00 AM. This afternoon, his belly measures a bit big so they're watching him closely to see how he tolerates the digestion. The plan is to go ahead and give him a glycerin suppository and feed him again as scheduled this afternoon since his belly stills feels soft and see how it goes. If he tolerates it well, he'll start getting fortified feedings beginning tonight. If he doesn't, they may cease feeding for a bit or back off a bit or just hold steady for awhile. He remains on higher ventilation support than the medics would like so they are going to give his PDA duct five days to declare whether it needs to be surgically corrected or not. The reason for the 5-day deadline is that is the time at which his PIC line needs to be removed (assuming he's steadily taking full, fortified feeds at that time) and they prefer not to perform the surgery once the PIC line is out because feeding is ceased for a few days following the procedure and they prefer to have the PIC line in for that as well as administration of medications. His weight was the same as the night before at 830 grams, or 1 lb., 13 oz.
Liam was re-intibated late yesterday afternoon after having a lot of trouble with his last breathing tube and he's doing much better on the new tube and has been weaned a little bit more on his ventilator as a result. His blood cultures have also come back negative for the 5th day so he got a new PIC line inserted today (in his left jugular vein) and we're told that he tolerated that procedure very well. He also got the all clear on his eye exam yesterday! Just to be cautious, he will continue on his Amphotericin B treatment for two weeks (measured from the date of the first negative blood cultures so about another week or so) so the medical team will continue to monitor him for signs of side effects. Even though the blood cultures have come back negative, to be cautious, the doctors will perform a spinal tap tomorrow (they refer to it as an LP or Lumbar Puncture). Our doctor has reassured us that she will personally perform the procedure, not a resident nor one of the neonatal nurse practitioners, and that she has personally done more than 1,000 of them. We're also more comfortable knowing a bit more about the procedure - they will tap into his spinal column in the lumbar area of his back and withdraw some spinal fluid which will be checked for signs of meningitis (yeast infection). The portion of the spinal column that is accessed is at the bottom where a space of fluid exists but where the spinal cord does not exist (it ends a little bit higher in the back) but there are a few major nerves that go to the legs in the region but we're assured that they very are easy to avoid. We'll hope and pray for that additional test to come back negative and then we'll continue to focus on the healing of his intestine. His weight was up last night to 760 grams or 1 lb., 11 oz so he's gaining ground and strength.
That's all for now. More to follow.
Regards,
Quick update ... I'll try to send out a longer one tonight. Both boys were seen by the heart surgeon today and both are scheduled for the ligation surgery to close the PDA's. Neither has made much progress on getting off of the ventilators so this is the time to do it. Owen's will be tomorrow (it's scheduled for 3:30 PM but may be as early as 1:00 if the schedule goes quickly). Liam's will be at 7:30 AM on Monday and will go as planned since it's the first of the day.
Regards
Eric
As promised ... I have a more in-depth update for you all!
This really has been a good week for the boys. Owen had a big day on Nov. 9th when he weighed in at 2 lbs! He increased his weight on Nov. 10th to 2 lbs, 1 oz and held steady there yesterday. We will find out tonight if he has gained any more. He otherwise was stopped and started on his feedings throughout the week because he was spitting up. These are all regular events with introducing feeding to babies this small so we'll start and stop several times before he's truly feeding at full feeds consistently. A part of the issue could very well be the PDA problem he's having and his body may be reacting to the heart and lung difficulty by failing to digest his food - that is also common because his body has very few ways to show us that he's having trouble so it often manifests itself in these other unlikely ways. He has not been able to be weaned from the ventilator and has sporadically needed additional support which has prompted the need for the ligation tomorrow.
Liam had a great week! His weight is rapidly catching up with his brother's and last night he weighed in at 880 grams, or 1 lb, 15 oz. we're hoping that tonight will see him crack the 2 lb barrier! On Nov. 10th, Martina got to hold him for the first time as the nurses decided to change out all of his bedding while we were visiting and since he has been very stable on his ventilator, she got to hold him for about 10 minutes - it was such a great moment to experience and one that we'll always cherish! Liam has still not had any material amount of stool, but his belly is continuing to appear better and better and the medical team says they can hear bowel sounds in his belly so we're optimistic that he'll start moving things soon. In fact, he had a small mucus-plug of stool this afternoon which is a great sign that things are working - albeit very slowly! He has continued to improve on his ventilator settings and is being weaned a bit every day but has leveled out in the past few days and the doctors say that his PDA is so large that it will not close on its own so he will also be getting the ligation procedure done on Monday morning. Lastly, the blood cultures and the spinal tap cultures have all finally come back with a "final negative" for evidence of further infection and meningitis so it is great to be able to report that officially to all of you. He has just a few more days of his Amphotericin B treatment and then hopefully never again!
That's all for now. We'll try to get updates out tomorrow on their status following Owen's ligation.
Regards,
Eric
Owen is done with his ligation surgery and all went as planned. He has a scar on his back on the upper left that is about 1.5 inches long (about half-way across his back) but as he grows it will one day be largely non-existent. The doctor said he did great, didn't need any blood transfusions, and so far has not needed to upgrade his ventilator - in fact, he's already being weaned down a bit on his ventilator so things may be improving already. We know he may have a tough weekend ahead as his body adjusts but after a few potential steps back, he should start taking big steps forward.
A quick update on Liam - he hit 2 lbs last night so that is great! He is struggling a bit with his belly as it is distended again (more than before) and another x-ray revealed just a lot of gas. Thankfully it is in the bowel and not free air in the abdomen, but he's not moving it thru and it is a little concerning to the doctors but not concerning enough yet to do anything about it. They discovered that the drain tube going from his stomach and out thru his mouth was improperly placed so now that that is in the correct spot, the hope is that it will begin to resolve itself. If nothing changes in the next few days, they will explore other avenues to determine why he isn't moving his bowels. They have a few tests they can do before resorting to surgery so we'll see how it goes and hopefully he'll resolve it without intervention.
Regards,
Eric
Owen is continuing to recover from his PDA ligation. Over the weekend he needed to be increased on his ventilator but that is to be expected following the surgery that he had as his heart is now having to pump much more forcefully to circulate the blood through his body. He has struggled a bit with some edema which is also a side effect of the surgery and hopefully that will work its way out in the next few days. The doctors continue to hear fluid and crackling in his lungs as a result of the edema, but again, its nothing that they're worried about. His weight has climbed to 1,070 grams (2 lbs 5 oz) but some of that could be the excess fluid he's retaining so that may come down a bit in the next few days but will hopefully remain above 1,000 grams. He received some blood yesterday since his hemoglobin was down and he also started showing some subtle signs of an infection yesterday (may be surgery-related or a result of the all of the IVs and other lines and blood draws, etc). He's been started on some antibiotics as a result while blood cultures are grown to determine if he has an infection. If nothing grows after 48 hours, they'll discontinue the antibiotics. If the cultures are positive, he'll be on the antibiotics for 7-10 days. He is not feeding yet following surgery and the blood transfusion yesterday, but may start again today.
Liam's PDA ligation scheduled for yesterday (11/16) was cancelled as a result of signs of infection that he had over the weekend. He had some elevated bands on some routine blood tests on Saturday indicating an infection or other inflammation in the body so two blood cultures were sent to the lab. He was started on antibiotics to be safe (this is always the case - they treat the possible infection clinically rather than waiting for positive cultures from the lab only to find out that he is infected and then they're 2-3 days behind on treating it) and yesterday one of the two cultures came back positive for infection. As is always the case when only one of two comes back positive, there is concern that the positive test was a contaminated sample so this morning they have sent for two more cultures. In the meantime, he will remain on the antibiotics until this second round of cultures comes back. If both are negative after 48 hours, he will be discontinued on the antibiotics. If they're positive, he will be on the antibiotics for 7-10 days. The PDA ligation will be re-scheduled for a time in the near future when he's no longer battling infection. He continues to have no real movement or resolution with his bowel issues, but the doctors are still relatively unconcerned at this point. They were debating last night attempting a suppository or other stimulant to move the air out but it was more as an attempt to resolve some of the pressure (and hopefully make him more comfortable) than an attempt to solve the problem with the lack of motility of his bowels. The doctors insist that this is a problem that can and does resolve itself but oftentimes not for 6 weeks or so. If it doesn't resolve by then, they will try a few other things to get things moving along, possibly including feeding him in very small amounts to see how he tolerates it and if it moves things along. Liam also received two blood transfusions over the weekend as a result of low hemoglobin levels and may get a platelet transfusion in the next few days as that has been low for him as well. Things are otherwise doing well for Liam - he was 1,010 grams last night so he's finally broken the 1 kg hurdle as well! That puts him at 2 lbs 3 oz.
That's all for now!
Regards,
Liam is having emergency surgery on his intestines scheduled for 4pm. His belly has deteriorated in the last 24 hrs so this is the time because his vitals are stable. Outcome of surgery could be very bad or could be ok. No one is giving odds and don't know until they get in the belly. We'll keep you posted.
Eric
Liam is doing well. He returned from the OR around 6:00 pm and we were able to get back to his bed about 30 minutes later. He is stable and we hope he stays that way. The surgeon was very happy with the outcome and essentially opened his intestine where it was dilated and obstructed and routed the intestine out of his body for the time being (it comes out of his belly button for now where it will drain all waste until it is re-attached at some point in the future). It helped immediately with the pressure in his bowel and he looks better already. He needed only 1/2 unit of blood in the surgery. They won't know for awhile how far down the intestinal tract that this resection is placed, but if its low enough down, he may actually be able to start feeding which would be very beneficial for him from both a growth standpoint and a liver standpoint (introducing feeds will wake up his liver). Even if the resection is higher up in the bowel, he may be able to feed but it will be much smaller amounts. The surgeon also noted that the rest of the bowel below the obstructed portion looks good and pink and he saw no indications that there are any portions of bowel that are necrotic (dead) so that is also great. He did note that the bowel on Liam's right side above the resection is very firm and quite a mess to be honest but he couldn't and wouldn't dare to work on it because the liver is there and there is too much risk for massive blood loss and possible death. The hope is that whatever is higher up the tract and obstructed will work its way down to the bowel stoma and will drain out. The surgeon said that putting stitches in the bowel of a baby this small is like sewing a wet kleenex and nothing holds very well so the plan is to get him to 2000 grams (roughly twice his current size) and then a more exploratory surgery can be performed if needed (hopefully not) and that is most likely when the bowel will be put back into the abdomen and re-attached so that it connects all the way through.
Liam is resting comfortably now. He will be heavily sedated for a few days but that is for the best. We are so relieved that things went well and hope it continues to go that way. We were very concerned because the doctors prepared us for the worst and quite frankly thought things would go quite differently but they had no choice but to do the surgery.
Owen has otherwise been doing well since Wednesday. It has been the worst week, emotionally, since these guys arrived. Owen's ligation surgery last Friday went well but around Monday his recovery took a step back and he started needing more support (which often happens). On Wed night things took a sharp turn for the worst and he completely shut down. His lungs clamped shut and he quit breathing and he coded when we were at his bedside. He had to be resuscitated (including chest compressions and bagged for ventilation). We thought we lost him when they asked us to step out of the NICU but they were able to bring him back and got him re-intubated and put him on a different ventilator that gives him 300-400 very small breaths per minute and helps to keep all of his air sacs open and helps to push the carbon dioxide and fluid out of his lungs. We finally got home around 2am on Thursday morning and he has been relatively stable since then. One thing we hope to never witness again is our child needing chest compressions and other emergency intervention to bring them back from respiratory and cardiac failure. I don't wish that on anyone.
We are continually reminded that these guys are nowhere near out of the woods and all of your continued support and prayers continue to help. We will keep you posted as things progress with these guys.
Eric
If I'm not mistaken, the last update via email was about 10 days ago so without further delay this is what's going on with the boys. Both have had a great 5 days or so and we couldn't be happier about it.
Owen is up to full feeds now, which for him is 17 cc's every three hours. That means that as of today, he's 100% reliant on his Mom's breast milk for his nutrition. His PIC line has been discontinued but remains in his arm for the time being just to make sure he's tolerating his feeding. If all goes well for the next 24 hours or so, he'll get that removed. That will be HUGE because that will greatly reduce his risk of infection going forward. His weight last night was 1,450 grams, or 3 lbs, 3 oz. We found out yesterday that he absolutely adores his pacifier - something he tolerated before but never really took to. It's one of those behaviors he'll start developing as he matures and becomes more like a full-term baby and less like a super preemie. He's also been weaning his ventilator with some pretty big jumps in the last 24 hours so hopefully he's on his way to extubation as well.
Liam continues to do really well following his surgery. His belly looks considerably better and he has passed a lot of stool out of the stoma that was created (routing the intestine out of the side of his belly). After the surgery, he had a lot of edema and gained a significant amount of weight, which is normal following abdominal surgery. He gained 25% overnight (went from 1,200 grams to 1,500 grams). He has finally shed all of that edema and fluid weight and he weighed in at 1,330 grams last night, or 2 lb, 15 oz. More importantly, he's responded so well to his abdominal surgery that he has been introduced to feeding - a very little bit, but food nonetheless. And it couldn't have come on a better day - he got his first cc of breast milk on Thanksgiving Day! He has tolerated it well (he only gets 1 cc every 12 hours) and the doctors may increase it to 1 cc every six hours in the next few days. He's also weaning his ventilator with some pretty big jumps of his own and he'll get an echocardiogram this week to determine if that PDA is still large and requires ligation or if it's closing. If it's closing, the plan may be to wait a bit and see if it closes completely on its own. He was also stable enough for Mom to hold him on 11/25 for about one hour and twenty minutes so that was great too! Hopefully there's a lot more holding for both of them in the future!
That's it for now.
Regards,
Eric B. Damko
The Damko boys have had a GREAT day today!
Owen extubated himself this morning around 8:15 AM and has since been breathing on his own with a little help from a high-flow nasal cannula. It is so great to see his whole face (it's a little obstructed by the nasal cannula) and even greater to see his little lungs doing all of the work on their own! Since he had been doing really well on his ventilator the past few days, the doctors told us that if and when he extubates himself (he tends to pull on his tube) again they would let him try doing it on his own and see how he fares. There's obviously a chance that he's not quite ready and make end up back on the ventilator, but this is a HUGE step in the right direction! In addition, he had his PIC line removed yesterday since he's been tolerating his feeds well, so as of right now, he has no IV lines or ventilator tubes in him so his risk of infection has exponentially decreased in the last 24 hours. He has his first eye exam today (standard for preemies) so hopefully they find nothing out of the ordinary there and we'll keep marching.
Liam is also having a great day. His lungs have historically been better than Owen's and the doctors are saying that if and when he extubates himself again they'll try to leave him off of his ventilator as well. He's still on his ventilator at the moment simply because he hasn't pulled it out yet, but I suspect that it will come out in the next 24 hours or so. The results from his echocardiogram from yesterday came back last night and showed a "small" PDA versus his previously "very large" PDA so what that means is that the doctors are not going to ligate him and see if it continues to close on its own. We are optimistic that it will do just that! He has also tolerated his feeds of 1 cc every 12 hours so well that they moved him up to 1 cc every six hours yesterday (or maybe it was Monday afternoon) and now that he's done really well at that they've increased him to 1 cc every four hours. The surgeon that operated on his belly last stopped in on rounds yesterday and examined him and was very pleased with his progress and says the plan is to get him to 2,500 grams and then they'll go in and fix him up. If we're lucky, that will be the last surgery for either of them. He also has another eye exam today (his third one since he had two while fighting his yeast infection earlier) and since the last two were good, we have no reason to believe we'll get anything but good news on this one as well.
That's all for now.
Regards,
Eric B. Damko
All-
Sorry for the general email to all but its the only way to reach everyone.
Martina was re-admitted to St Joes last Wed night with painful contractions. All tests were okay at the time but doctors could not identify reasons for contractions. She was eventually put on a magnesium sulfate drip which worked very well to reduce the contractions but its a nasty drug that makes you feel unsteady, groggy, nauseas, headache, feel on fire, etc. After two days they tried to step down the dose but contractions returned. After another few days at the higher dose (today) they tried again to step down and contractions returned. Fear at this point is infection that may have set in prior to the cerclage but that often goes undetected for 2-4 weeks.
This afternoon, the doctors decided to do an amniocentisis (sp?) to rule out or in an infection. The two results were mixed. The glucose test was very low which indicates an infection as the bacteria feed on the glucose in the amniotic sac however the Gramm test was negative for bacteria present. The doctor believes this is a false negative as the prophylactic antibiotics she's been on has probably masked the infection and held it at bay.
The plan now is to take out the cerclage (which has now been done) and see what happens. If contractions ramp up and cervical changes occur, delivery will occur immediately thereafter. If not, she will try to stay pregnant as long as possible. Its not unheard of for that to occur, but highly unlikely.
As you all can imagine, its way too early for these babies to arrive. Martina has carried them past the critical 24 week point, but we're now in a window that might be even worse, quite frankly. The neonatologist spoke with us on Thur and very bluntly explained the procedure from here if the babies arrive and how it changes the longer we can go. Martina is 24 weeks and 4 days today which means delivery today results in a 50% survival rate and of those that survive, 50% have normal brain function. If she can make it to 28 weeks for example, those figures improve to 80% compared to 97% for full term babies. She did successfully get the two doses of steroid injections on Sat and Sun which speeds up the development of babies' lungs, intestines, and brain in preparation of preterm delivery.
We will try as best as possible to keep you posted as we go along. Your prayers as always are greatly appreciated.
Regards,
Eric
Exam at noon revealed the cervix is still fairly well closed but very thinned out and lots of pressure behind it so decision is made. C-section is being done in a few minutes. Growth ultrasound this morning pegged A at 1 lb, 8 oz and B at 1 lb, 9 oz. We will pray for the best. Will let you know when we know more.
Eric
Our boys have arrived!
Owen James Damko was born at 12:52 pm, weighed 1 lb, 6 oz, and measured 12.5 inches.
Liam Frederic Damko was born at 12:54 pm, weighed 1 lb, 5.4 oz, and measured 12.75 inches.
Although they are here and they are fighters, we are a long way from being out of the woods. They are in the NICU where they will stay for the next 12-16 weeks. The first 24-48 hours tends to be a bit of a honeymoon period and any complications that may arise would present shortly after that window. For that reason, the doctors tell us to tread cautiously until these boys are 7-10 days old. At approx 7 days they will get their first ultrasound brain scan that will reveal the number and severity of any brain hemorrhages, which is what causes any permanent developmental problems so we will continue to pray for good results. Both boys are currently experiencing some blood pressure problems but are being treated with meds for that. The medicine is very slowly titrated so that they very slowly bring their blood pressure up. Moving too quickly can cause brain hemorrhaging. Otherwise, the boys are behaving and responding to all treatments as they expect 24-week preemies to do. They are on ventilators to assist them with breathing and have catheters through their bellybuttons for feeding and medicine. All food will come through the catheter until their stomachs are ready for food, at which time they will start receiving breast milk through a feeding tube into the stomach until they are old enough to coordinate their suck/swallow motor skills and then they can begin regular feeding.
Martina is settled into her room in the antenatal wing of the hospital. She will be here for 3 days or so. She is very groggy this evening but has had a chance to meet her boys. We have not held them and have no idea when we will get to do that for the first time. She says she welcomes calls to her cell phone (602-527-1297) but may not feel like talking before tomorrow.
More updates to follow and possibly even a few pics.
Love,
Eric
We had a bit of setback today with Liam but hopefully nothing major. We learned around 11:00 AM that the doctors discovered open air in his abdomen. Further evaluation and x-ray revealed that he had suffered a perforation of his intestine. Since birth, he has and continues to receive all nutrients through the catheter that was inserted into the vein of his umbilical cord so the doctors believe it was a spontaneous perforation opposed to one that occurs as a result of feeding. It apparently is not a terribly uncommon complication for babies of his age, but is concerning nonetheless because of the risk of infection. The NICU called in a neonatal surgeon that we met with who explained the procedure that was to be done. The surgeon performed a short procedure that involved a small incision on Liam's lower right side of his abdomen (similar location to an appendectomy). Once inside, the surgeon said there was a pretty sizeable amount of stool and other infected material that he thoroughly flushed out and irrigated and then placed a drain in the incision that will remain for the next few weeks to continue to drain the area. The actual perforation is not treated in babies of his size in this initial procedure. Once the loose stools are removed from the belly and the antibiotics are introduced, the doctors wait to see if the hole in the bowel will heal on its own since an intrusive corrective surgery at his current size just causes more problems than it solves. Babies that undergo this procedure have one of three outcomes: 1) Many will heal and close the bowel perforation on their own, 2) others will not heal and will need a more intrusive surgery in the future to remove the section of perforated bowel, and 3) still others will heal but will get scar tissue that results in a stricture in that area of the bowel which inhibits the progression of food through the bowels which also results in a more intrusive surgery in the future to remove the section of bowel that has the stricture. We will continue to hope that Liam will fall into group 1.
The procedure was very short in duration and was done around 12:15 PM and we're comforted that it was not deemed severe enough to perform in the operating room, but rather, it was done bedside in the NICU. Liam did very well and is resting comfortably at this time and will probably be sleepy and disoriented for the rest of the day due to the anesthetics that he received and the pain meds. They have now added an additional antibiotic to his other meds to cover some of the possible other infections that he may be fighting that aren't covered by the other antibiotics that he's on. He also will be receiving a transfusion of blood platelets today as his count was low (presumably) due to the infection in his abdomen. He also now has an additional line that runs along side his breathing tube but runs all the way down into his stomach. That tube has a light amount of suction on it so that any fluid that ends up in his stomach over the next two weeks while healing will be sucked out before it can make its way down into the bowels with the goal being to not introduce any new matter into the bowels while the bowels are still healing and the risk of stools leaking into the abdomen remains. The main fear at this point is the risk of infection in the bowels and the abdomen so we will continue to hope that it will heal on its own and the antibiotics will work. Due to the procedure, he will not start feeding for a minimum of two weeks so he will continue to receive his nutrients through the belly button catheter. Other than that, he has been weaned off of this blood pressure meds and the insulin drip so we will hope that when he recovers from this and is ready to eat, they will feed him more and more so that he can catch up with his brother.
Speaking of his brother, Owen is doing quite well. He was moved into Liam's pod last night so now they are neighbors rather than being on opposite ends of the NICU. This is a great sign because we were initially told they would not be pod mates until they were stabilized enough so as to no not over burden one pod team of medics with two critical babies so the fact that they are pod mates now means that they have crossed that bridge! Owen is also off of all of his blood pressure meds and is very close to getting his breathing tube out for the second time. The hesitation is that they don't want to remove it only to re-intibate him in the future. His oxygen concentration that he's getting is 21% which is equal to room air so it should be only a matter of a short time before he gets the tube out. His ventilator is on the lowest setting possible and he's doing most of the breathing on his own. He will probably start receiving breastmilk as early as tonight through a feeding tube into his stomach and will slowly get weaned off of the catheter-fed nutrients and start taking 100% breastmilk within a few days/weeks.
More updates to follow. Gotta run -we're heading over to see the boys now.
Eric
Nothing much has changed today other than Martina did get discharged. I know its best for her to be at home where she will rest and recover better and get stronger so that she can be even stronger for her babies, but is proving far difficult for her to be such a ways away versus just down the hall. We will keep pushing through this. The boys are stabilized today and their tests are improving so they're being ratcheted down little by little from their ventilators and other meds. Both will have some additional testing tomorrow including chest ultrasounds to scan for any other undiagnosed or other common abnormalities that occur in babies of their gestational age. We will keep you posted.
Regards,
Eric
We had a good day today. Both boys have stabilized on their ventilators and other meds and were even continually weaned a bit more on their ventilators today. Liam is doing well on his recovery - the drain is continuing to do its job and he did not need any pain meds today as he did not exhibit any signs that he was in pain. Both received echo cardio grams today on their hearts to check for the duct issue that is common with babies of their age. Results on those tests won't be available until tomorrow. If they are afflicted with that issue, the doctors will decide whether to do nothing (if small enough, these often close on their own) or to take corrective action. The corrective action will include two drugs that are administered in two courses of therapy. One is a powerful anti-inflammatory drug and the other is a steroid. Approx. 50% of those treated with the drugs end up closing as a result and the other 50% require a corrective surgery, but the doctors today informed us that it is a quite common procedure that is routine with consistently good outcomes. The side affects of the drug therapy are reduced blood flow to the digestive tract and kidneys and risk of infection. The infection risk and reduced blood flow to the digestive tract are not much of a worry to the doctors at this time since neither are eating yet (therefore not using their digestive tracts) and both are being treated with antibiotics prophylacticly. The reduced blood flow to the kidneys is closely monitored and other actions can be taken if it becomes necessary. We will cross that bridge when we come to it.
We also received word today that one of the two placentas did test positive for infection which at last gives us some closure as to what caused the pre-term labor. The doctors are unable to tell which placenta it was since both came out together with the birth of Liam. We assume it was Owen since his bag was the only one to be exposed through the cervix back in September when Martina was found to be a little bit dilated, but we'll never know for sure. Instead of a 7-day treatment of antibiotics, both will receive a 14-day course since its not known which one was infected.
That's all for now. We're heading back over to the hospital momentarily to see the boys again.
Regards,
Eric
Today was another uneventful day - which means it was a good day in the NICU! Both boys were weaned a bit more on their ventilators and are inching towards not needing them anymore. In fact, they may attempt to take Owen's out again as early as tomorrow, but no guarantees. The doctors are hesitant to do it until they're reasonably sure that they won't need to go back on it because continued re-intibation of the airway can cause damage and scarring. Both were fully weaned off of the hydrocortisone they were receiving (it was the last of the blood pressure meds they were receiving) and are both now on caffeine as it is a stimulant that will continue to reduce their apnea/bradycardia episodes that occur as a result of their immaturity (referred to in the NICU as the A's and B's). They both essentially forget to breathe from time to time (apnea) which results in their heart rate suddenly dropping (bradycardia) which is normal for them at their gestational age because their brains are not yet mature enough to tell the lungs to keep breathing and the heart to keep beating. It is a motor function that will eventually be hard-wired but until then the caffeine therapy is the route to take. Owen seems to have a lot of episodes of the A's and B's while on his right side so they took some additional chest scans today and can't seem to find anything abnormal. The scan confirmed that the breathing tube is well-placed in his lungs, but they did note that it runs down the right side of his airway so the suspicion is that it rubs or irritates him when he's on his right side.
Both boys' results of the echocardiograms came back today and revealed that Owen does not suffer from the open duct of the hear while Liam does. The specific condition is called Patent ductus arteriosus (PDA) and there is some great information about it that I found on www.wikipedia.com. As mentioned yesterday, it is very common for preemies to have this condition. All newborns arrive with the duct open and shortly after they begin to breathe using their lungs, the duct closes. Often time premature babies lack the strength and/or the lungs fail to emit enough of the chemical component required to close duct. Some will eventually close on their own, as is suspected with Owen. The doctors heard a murmur last week but the chest scan revealed that the duct has now closed. There is a chance that it could re-open, so we won't fully erase him from that category yet, but its closed for now and that's good. Liam was found to have a large duct; however, it is not currently affecting him so the doctors will not intervene for the time being. They now have a good baseline measurement based on yesterday's echocardiogram and as long as his lungs are not having a significant amounts of edema and he continues to be able to be weaned off of his respirator, they will just observe. They will periodically administer additional echocardiograms and if there is progress and signs that it is closing on its own, the medical staff will stand back and let nature work. If his tests get worse or he fails to improve on the ventilator, they will intervene and attempt the pharmacological approach and then resort to surgery if needed. We'll keep you updated on both.
We also found out today that both boys have inguinal hernias. Again, I found some good information about this condition at www.wikipedia.com. Owen has one on his left side and Liam and two - one on each side. Again, this is a common condition with babies of their age as their abdomens are so delicate and underdeveloped, that the intestines can push into places they are not supposed to be. They are monitored daily and are not painful to the boys, however, we were informed the only means for correction is surgery. The good news is that both remain "reduceable" which apparently means they can be pushed back into the abdomen. As long as they remain "reduceable" (again, they are monitored daily) the doctors will not correct them until they are a few months past their original due date as they like to operate on larger babies because its much easier. The doctor today said that the these are literally one of the easiest and most routine surgeries to perform on infants so we're optimistic that when the time comes for it, it will be an easy procedure. They also mentioned that if we're at all interested in circumcising the boys, the hernia surgery is the best time because the doctor can do it while they are already under anesthetic for the hernia surgery.
The catheters that currently run into and out of the boys' belly buttons need to be removed as they are only good for 7-10 days. In addition, the abdomen needs to heal and close and those lines need to be discontinued so both will have peripherally inserted central catheters (or PIC lines) placed. The PIC line is essentially an IV catheter that is inserted into the arm, leg, or foot that is then threaded all the way up into a larger vessel in the abdomen or chest. Through that line, the boys will receive all of their nutrients while waiting to eat through their stomachs as well as they will receive all medications and blood can be drawn from the lines. The lines are meant to be long-term lines (only need to be replaced every month or so) and avoids having to stick them with needles each time blood needs to be drawn and avoids needing a new IV line every three days since traditional IV lines are only good for 3-4 days. Owen is 0 for 2 and Liam is 0 for 1 at attempts to get PIC lines in, but they will try on Liam again tonight and Owen again tomorrow. It is common with babies as small as them to take several attempts before they get it in and properly placed. The line they tried in Owen's leg today got 75% of the way there before coiling up near his hip and having to be removed.
Lastly, the GREAT news to report tonight is that Owen has started eating! He had a new line running along his breathing tube today and we found out that it was his feeding tube! He got his first serving of breastmilk today and now he's being watched like a hawk! We are excited for this new step but not getting our hopes up too high just yet as feeding is very much touch and go with guys this age because their digestive systems just aren't set up yet for digesting food; however, the benefits of breastmilk far outweigh the risks of waiting and that is why they start as soon as they can. Its not uncommon for them to start and stop eating several times before their body figures out how to process the food so he may go on and off of feeding several times before staying on it for good. They say the 32-34 week mark of gestational age is where he should start to consistently stay on it. For now, he gets 1 mL every 12 hours - that's only a few drops! If he tolerates it, he'll get bumped up to 1 mL every 6 hours, then every 3 hours, and then he'll get more volume every 3 hours. In the meantime, while he adjusts to breastmilk, he will continue to get all necessary nutrients through the IV as Liam does. Liam will try eating in about two weeks if everything with his intestinal perforation goes as planned, which it still is.
That's all for today! More to follow tomorrow!
Regards,
Eric
I can't recall where things left off with the last update. Up until yesterday, the boys had been fairly stable with no material changes, which was good. They've both had some setbacks as of yesterday that have us worried, but we're still optimistic of a positive outcome.
Yesterday, Owen started struggling on his ventilator settings as the medical team continued to wean him off of it which prompted them to push it back up to higher settings. He continued to need the higher settings all day and was exhibiting signs of perhaps a return of the PDA (the heart duct that I mentioned in previous emails) as the nurses and doctors also could audibly hear a murmur when using a stethoscope. They ended up ordering another echocardiogram which was completed yesterday afternoon and we got the results last night that he does in fact have a small to moderate PDA. As mentioned previously, its not uncommon for the duct to open even after it has closed (which it had previously done in his case) but since its small to moderate, they'll monitor him for a few days to see if it will close up again on its own. If not, he'll most likely undergo the surgery to close the duct. The pharmaceutical option for him has or most likely will expire as the general rule of thumb that we've learned for use of the drugs available to close the duct are only for the first 10 days of life and even then there's an approx. 50% chance of success but there are side effects. We'll cross that bridge when we get there, but its probably best since he's now 15 days old to go ahead and do the surgery (if necessary) rather than attempt the drug route this far past the 10-day window and with only a 50% chance of success and the added risk of side effects. He's otherwise holding steady but he hasn't had breastmilk for the past 24 hours and most likely won't until the doctors decide what to do about the duct. He will continue to receive his nutrition from the IV in the meantime. His weight was up to 740 grams, or 1 lb, 10 oz and has held steady there for 36 hours or so.
Liam is having his own set of complications but has stabilized this morning. A few days ago the doctors noticed that his abdomen appears distended again and an x-ray revealed a mass of free air in there again. There is no new bowel perforation but the belief is that the existing perforation has probably not fully healed yet and air may be continuing to leak from the bowel into the abdomen. The drain that's been inserted is supposed to drain free air as well as any fluid, but it does not appear to be draining the air at this time. The good news is that the surgeon sees him daily and he's not concerned enough to do anything for now. The mass of air does not appear to be growing so that's a good sign and the hope from the surgeon is that the air will eventually make its way over to the drain and escape or will otherwise be absorbed by the body. The re-absorption route, if it goes that way, will just take a while since the body isn't meant to absorb air in that way. His vital signs with respect to the mass of air are steady so unless that changes, they won't do anything. If that changes, they may re-position the drain and try to get the air out. Yesterday, the nurses noted a growing rash on Liam's body that they are suspicious of. It appears to be a skin yeast infection which is not as common as the other complications he's faced, but is occasionally seen with babies of this age. They sent for two blood cultures last night to determine if the infection has also spread to his blood. Those will take 3 days to get results. In the meantime, the NICU has called in an Infectious Disease Specialist that will see Liam today and determine the best course of action. Even before seeing the specialist in person, the specialist has started him on a powerful dose of diflucan intravenously (an anti-fungal drug) and he is also being treated with an anti-fungal topical ointment. Its good to know that they proactively take these measures and they don't take infection lightly. I'm not sure how the treatment will change if the blood tests positive for the yeast infection, but we'll deal with that if and when the time comes. His respiratory rate and ventilator settings have required a lot adjustment overnight, the instability of which they believe is a result of the underlying yeast infection. The report this morning is that he's stabilized quite a bit and is resting. He continues to receive his nutrition from the IV and with the underlying gut condition, it may be 6 weeks before he's allowed his first breastmilk, but if that's the case, we'll catch him up! His weight was actually up bit yesterday to 640 grams which is his highest weight yet and slightly higher than his birth weight so that is good. He tends to be up and down on his weight, but its much better than the 500 grams that he weighed early last week.
That's it for now. We'll try to send out updates when we find out more.
Regards,
Eric
Today (and the last few) were pretty uneventful (and therefore pretty good ones) for the boys. There have been no changes to Owen's routine except that he is eating more and more and seems to be tolerating it well. He was increased today from 3 mL every 6 hours to 3 mL every 3 hours. If all goes well, he'll stay at 3-hour feedings and continue to increase his volume. His weight for the past 36 hours or so has held steady at 750 grams.
Liam is stabilized and doing well on his meds. The blood cultures for the yeast infection came back one positive and one negative on the third day of the culture growth. The infectious disease doctor is not sure if the positive test was a false positive that could have been contaminated when the specimen was collected as his skin was covered with the rash and even though they clean it very well before inserting the needle for the blood draw, there is a chance that it could have been contaminated nonetheless. He is not exhibiting the symptoms that he should have if his blood was infected so that's good and we'll see how the next round goes. As a result of the positive culture, two additional cultures were ordered but those results won't be available for another two days. Until then, he's being treated as if it has spread to his blood. The medication was changed from Diflucan to Amphotericin B - a much more potent but much more caustic anti-fungal. Once the doctors were able to determine the strain of fungus that he had, the therapy was adjusted to attack it with a more potent drug that will more efficiently attack the infection. Such is the case with the Amphotericin B. It is a switch that had to be made anyways because he did not appear to be getting better on the Diflucan. He wasn't getting worse, but was not improving. The Amphotericin B is very caustic as I mentioned, so it is administered via its own IV line and can have some severe side effects, but the benefits far outweigh the risks and the medical team monitors all of his vital organ functions very closely so that therapies can be adjusted if side effects become problems. If the fungus proves to be present in the blood, the next area of concern is whether it has spread to his spinal fluid and certain organs that harbor colonies of the fungus in little balls of fungus creatively referred to as "fungal balls" such as the kidneys and eyes. To that end, he will have a renal ultrasound tomorrow and an eye exam on Wednesday and possibly a spinal tap on Tuesday or Wednesday to check for the presence of the fungus (again, if the blood cultures come back positive). We were told that if the blood test comes back positive and even if the spinal fluid test comes back positive, it does not change the drug nor the dose of the treatment it only changes the length of time of the treatment. As a result of the positive blood culture he's had thus far, the PIC line was removed from his arm which is standard protocol when a blood infection is suspected. That will be replaced after 5 consecutive days of infection-free blood tests so until then, he's got a few regular IVs that have been inserted.
The drain in the belly fell out a few days ago as it was supposed to do (the surgeon had been pulling a little bit out each day) and an open fistula remains where a significant amount of stool and bile is continuing to drain from the abdomen. Although we were and still are quite alarmed and concerned by it, the surgeon sees him every morning and insists that it is healing as he wants it to so we continue to trust the doctors. The size of his distended belly has not changed, but true to the doctor's nonchalance, the belly is appearing better in color today and the fistula has reduced significantly to a barely noticeable hole in his belly. It is still draining bowel contents, but he also had his first good sized stool today in his diaper that came from the proper exit so there was cause for excitement that perhaps his bowels have or are healing and everything is going in the right direction. Only time will tell, but again, the doctors and nurses are not concerned so we try not to concern ourselves with it for now as well.
Lastly, Liam's weight was up to 710 grams today, only a few grams behind his brother so we were thrilled to see that. The nurse didn't want us to get too excited because she insists that its mostly edema resulting from the yeast infection that he's fighting and she pointed to his feet to show us the swelling but I honestly don't see much swelling at all (granted, I have an untrained eye) so we're optimistic that some or all of that weight gain may truly be legitimate weight gain!
Well ... that's it for now. More to follow as conditions change and as time permits!
Regards,
Eric
The last few days have been pretty good. Owen has continued to increase his feedings and is now at 7 mL every three hours and will keep increasing by 1 mL every 12 hours if he keeps tolerating it well! He's otherwise had no changes except that they continue to try to wean him off of his ventilator but the PDA prevents them from making big jumps - the thought and hope still is that he'll close that duct on his own at some point. If surgery is opted for, they prefer not to do it until he gets to between 2 and 2.5 lbs. His weight is up to 830 grams or 1 lb, 13 oz now so he's making progress.
Liam is responding well to the Amphotericin B therapy so we'll keep praying for continued success there. His second round of blood cultures both remained negative as of 9 PM or so last night which was 75 hours. They won't give him the 'all clear' until he's reached 5 days of negative blood cultures so we'll keep chugging along. His skin has completed cleared up so that's a good sign. His brain ultrasound on Monday also tested negative for meningitis (which was the concern with the yeast colonizing in his body) and the echocardiogram and renal scans also tested negative for colonization in them. He has an eye exam today that will show if there is any colonization in his eyes. Lastly, they may or may not perform a spinal tap this week to test whether the infection got as deep as his spinal fluid, but I believe the need for that test will be determined by the blood cultures and the other exams he's undergoing, but I'm not certain. His weight is up slightly to 720 grams so that's good too - every little bit helps. The hole in his belly has almost completely healed over although the efficacy of the procedure won't be known for some time. The doctors say one of three things will happen: 1) he'll heal and everything will start passing through the way it supposed to and all will be good; 2) it won't heal and an abscess will form under the skin and another procedure - possibly another insertion of a drain or a more invasive procedure - will have to be performed; or 3) he will heal with a stricture in the intestine that prevents food/waste from passing through as necessary which will result in an invasive procedure to remove the stricture from the intestine and re-connect everything.
We were there for rounds last night and spoke a bit with the neonatologist and he was emphatic about the fact that the enemy to both boys at this point continues to be infection so we will continue to hope and pray that they navigate those waters and continue to get bigger and stronger and get their IVs and other lines out as soon as possible - Owen will get his out sooner than Liam if he continues to progress as he has because the lines and the tubes are the greatest risk for infection that they will face.
Regards,
Eric
The boys have had another good 24 hours. Owen is continuing to have good feedings and had his first 10 mL feeding today at 11:00 AM. This afternoon, his belly measures a bit big so they're watching him closely to see how he tolerates the digestion. The plan is to go ahead and give him a glycerin suppository and feed him again as scheduled this afternoon since his belly stills feels soft and see how it goes. If he tolerates it well, he'll start getting fortified feedings beginning tonight. If he doesn't, they may cease feeding for a bit or back off a bit or just hold steady for awhile. He remains on higher ventilation support than the medics would like so they are going to give his PDA duct five days to declare whether it needs to be surgically corrected or not. The reason for the 5-day deadline is that is the time at which his PIC line needs to be removed (assuming he's steadily taking full, fortified feeds at that time) and they prefer not to perform the surgery once the PIC line is out because feeding is ceased for a few days following the procedure and they prefer to have the PIC line in for that as well as administration of medications. His weight was the same as the night before at 830 grams, or 1 lb., 13 oz.
Liam was re-intibated late yesterday afternoon after having a lot of trouble with his last breathing tube and he's doing much better on the new tube and has been weaned a little bit more on his ventilator as a result. His blood cultures have also come back negative for the 5th day so he got a new PIC line inserted today (in his left jugular vein) and we're told that he tolerated that procedure very well. He also got the all clear on his eye exam yesterday! Just to be cautious, he will continue on his Amphotericin B treatment for two weeks (measured from the date of the first negative blood cultures so about another week or so) so the medical team will continue to monitor him for signs of side effects. Even though the blood cultures have come back negative, to be cautious, the doctors will perform a spinal tap tomorrow (they refer to it as an LP or Lumbar Puncture). Our doctor has reassured us that she will personally perform the procedure, not a resident nor one of the neonatal nurse practitioners, and that she has personally done more than 1,000 of them. We're also more comfortable knowing a bit more about the procedure - they will tap into his spinal column in the lumbar area of his back and withdraw some spinal fluid which will be checked for signs of meningitis (yeast infection). The portion of the spinal column that is accessed is at the bottom where a space of fluid exists but where the spinal cord does not exist (it ends a little bit higher in the back) but there are a few major nerves that go to the legs in the region but we're assured that they very are easy to avoid. We'll hope and pray for that additional test to come back negative and then we'll continue to focus on the healing of his intestine. His weight was up last night to 760 grams or 1 lb., 11 oz so he's gaining ground and strength.
That's all for now. More to follow.
Regards,
Quick update ... I'll try to send out a longer one tonight. Both boys were seen by the heart surgeon today and both are scheduled for the ligation surgery to close the PDA's. Neither has made much progress on getting off of the ventilators so this is the time to do it. Owen's will be tomorrow (it's scheduled for 3:30 PM but may be as early as 1:00 if the schedule goes quickly). Liam's will be at 7:30 AM on Monday and will go as planned since it's the first of the day.
Regards
Eric
As promised ... I have a more in-depth update for you all!
This really has been a good week for the boys. Owen had a big day on Nov. 9th when he weighed in at 2 lbs! He increased his weight on Nov. 10th to 2 lbs, 1 oz and held steady there yesterday. We will find out tonight if he has gained any more. He otherwise was stopped and started on his feedings throughout the week because he was spitting up. These are all regular events with introducing feeding to babies this small so we'll start and stop several times before he's truly feeding at full feeds consistently. A part of the issue could very well be the PDA problem he's having and his body may be reacting to the heart and lung difficulty by failing to digest his food - that is also common because his body has very few ways to show us that he's having trouble so it often manifests itself in these other unlikely ways. He has not been able to be weaned from the ventilator and has sporadically needed additional support which has prompted the need for the ligation tomorrow.
Liam had a great week! His weight is rapidly catching up with his brother's and last night he weighed in at 880 grams, or 1 lb, 15 oz. we're hoping that tonight will see him crack the 2 lb barrier! On Nov. 10th, Martina got to hold him for the first time as the nurses decided to change out all of his bedding while we were visiting and since he has been very stable on his ventilator, she got to hold him for about 10 minutes - it was such a great moment to experience and one that we'll always cherish! Liam has still not had any material amount of stool, but his belly is continuing to appear better and better and the medical team says they can hear bowel sounds in his belly so we're optimistic that he'll start moving things soon. In fact, he had a small mucus-plug of stool this afternoon which is a great sign that things are working - albeit very slowly! He has continued to improve on his ventilator settings and is being weaned a bit every day but has leveled out in the past few days and the doctors say that his PDA is so large that it will not close on its own so he will also be getting the ligation procedure done on Monday morning. Lastly, the blood cultures and the spinal tap cultures have all finally come back with a "final negative" for evidence of further infection and meningitis so it is great to be able to report that officially to all of you. He has just a few more days of his Amphotericin B treatment and then hopefully never again!
That's all for now. We'll try to get updates out tomorrow on their status following Owen's ligation.
Regards,
Eric
Owen is done with his ligation surgery and all went as planned. He has a scar on his back on the upper left that is about 1.5 inches long (about half-way across his back) but as he grows it will one day be largely non-existent. The doctor said he did great, didn't need any blood transfusions, and so far has not needed to upgrade his ventilator - in fact, he's already being weaned down a bit on his ventilator so things may be improving already. We know he may have a tough weekend ahead as his body adjusts but after a few potential steps back, he should start taking big steps forward.
A quick update on Liam - he hit 2 lbs last night so that is great! He is struggling a bit with his belly as it is distended again (more than before) and another x-ray revealed just a lot of gas. Thankfully it is in the bowel and not free air in the abdomen, but he's not moving it thru and it is a little concerning to the doctors but not concerning enough yet to do anything about it. They discovered that the drain tube going from his stomach and out thru his mouth was improperly placed so now that that is in the correct spot, the hope is that it will begin to resolve itself. If nothing changes in the next few days, they will explore other avenues to determine why he isn't moving his bowels. They have a few tests they can do before resorting to surgery so we'll see how it goes and hopefully he'll resolve it without intervention.
Regards,
Eric
Owen is continuing to recover from his PDA ligation. Over the weekend he needed to be increased on his ventilator but that is to be expected following the surgery that he had as his heart is now having to pump much more forcefully to circulate the blood through his body. He has struggled a bit with some edema which is also a side effect of the surgery and hopefully that will work its way out in the next few days. The doctors continue to hear fluid and crackling in his lungs as a result of the edema, but again, its nothing that they're worried about. His weight has climbed to 1,070 grams (2 lbs 5 oz) but some of that could be the excess fluid he's retaining so that may come down a bit in the next few days but will hopefully remain above 1,000 grams. He received some blood yesterday since his hemoglobin was down and he also started showing some subtle signs of an infection yesterday (may be surgery-related or a result of the all of the IVs and other lines and blood draws, etc). He's been started on some antibiotics as a result while blood cultures are grown to determine if he has an infection. If nothing grows after 48 hours, they'll discontinue the antibiotics. If the cultures are positive, he'll be on the antibiotics for 7-10 days. He is not feeding yet following surgery and the blood transfusion yesterday, but may start again today.
Liam's PDA ligation scheduled for yesterday (11/16) was cancelled as a result of signs of infection that he had over the weekend. He had some elevated bands on some routine blood tests on Saturday indicating an infection or other inflammation in the body so two blood cultures were sent to the lab. He was started on antibiotics to be safe (this is always the case - they treat the possible infection clinically rather than waiting for positive cultures from the lab only to find out that he is infected and then they're 2-3 days behind on treating it) and yesterday one of the two cultures came back positive for infection. As is always the case when only one of two comes back positive, there is concern that the positive test was a contaminated sample so this morning they have sent for two more cultures. In the meantime, he will remain on the antibiotics until this second round of cultures comes back. If both are negative after 48 hours, he will be discontinued on the antibiotics. If they're positive, he will be on the antibiotics for 7-10 days. The PDA ligation will be re-scheduled for a time in the near future when he's no longer battling infection. He continues to have no real movement or resolution with his bowel issues, but the doctors are still relatively unconcerned at this point. They were debating last night attempting a suppository or other stimulant to move the air out but it was more as an attempt to resolve some of the pressure (and hopefully make him more comfortable) than an attempt to solve the problem with the lack of motility of his bowels. The doctors insist that this is a problem that can and does resolve itself but oftentimes not for 6 weeks or so. If it doesn't resolve by then, they will try a few other things to get things moving along, possibly including feeding him in very small amounts to see how he tolerates it and if it moves things along. Liam also received two blood transfusions over the weekend as a result of low hemoglobin levels and may get a platelet transfusion in the next few days as that has been low for him as well. Things are otherwise doing well for Liam - he was 1,010 grams last night so he's finally broken the 1 kg hurdle as well! That puts him at 2 lbs 3 oz.
That's all for now!
Regards,
Liam is having emergency surgery on his intestines scheduled for 4pm. His belly has deteriorated in the last 24 hrs so this is the time because his vitals are stable. Outcome of surgery could be very bad or could be ok. No one is giving odds and don't know until they get in the belly. We'll keep you posted.
Eric
Liam is doing well. He returned from the OR around 6:00 pm and we were able to get back to his bed about 30 minutes later. He is stable and we hope he stays that way. The surgeon was very happy with the outcome and essentially opened his intestine where it was dilated and obstructed and routed the intestine out of his body for the time being (it comes out of his belly button for now where it will drain all waste until it is re-attached at some point in the future). It helped immediately with the pressure in his bowel and he looks better already. He needed only 1/2 unit of blood in the surgery. They won't know for awhile how far down the intestinal tract that this resection is placed, but if its low enough down, he may actually be able to start feeding which would be very beneficial for him from both a growth standpoint and a liver standpoint (introducing feeds will wake up his liver). Even if the resection is higher up in the bowel, he may be able to feed but it will be much smaller amounts. The surgeon also noted that the rest of the bowel below the obstructed portion looks good and pink and he saw no indications that there are any portions of bowel that are necrotic (dead) so that is also great. He did note that the bowel on Liam's right side above the resection is very firm and quite a mess to be honest but he couldn't and wouldn't dare to work on it because the liver is there and there is too much risk for massive blood loss and possible death. The hope is that whatever is higher up the tract and obstructed will work its way down to the bowel stoma and will drain out. The surgeon said that putting stitches in the bowel of a baby this small is like sewing a wet kleenex and nothing holds very well so the plan is to get him to 2000 grams (roughly twice his current size) and then a more exploratory surgery can be performed if needed (hopefully not) and that is most likely when the bowel will be put back into the abdomen and re-attached so that it connects all the way through.
Liam is resting comfortably now. He will be heavily sedated for a few days but that is for the best. We are so relieved that things went well and hope it continues to go that way. We were very concerned because the doctors prepared us for the worst and quite frankly thought things would go quite differently but they had no choice but to do the surgery.
Owen has otherwise been doing well since Wednesday. It has been the worst week, emotionally, since these guys arrived. Owen's ligation surgery last Friday went well but around Monday his recovery took a step back and he started needing more support (which often happens). On Wed night things took a sharp turn for the worst and he completely shut down. His lungs clamped shut and he quit breathing and he coded when we were at his bedside. He had to be resuscitated (including chest compressions and bagged for ventilation). We thought we lost him when they asked us to step out of the NICU but they were able to bring him back and got him re-intubated and put him on a different ventilator that gives him 300-400 very small breaths per minute and helps to keep all of his air sacs open and helps to push the carbon dioxide and fluid out of his lungs. We finally got home around 2am on Thursday morning and he has been relatively stable since then. One thing we hope to never witness again is our child needing chest compressions and other emergency intervention to bring them back from respiratory and cardiac failure. I don't wish that on anyone.
We are continually reminded that these guys are nowhere near out of the woods and all of your continued support and prayers continue to help. We will keep you posted as things progress with these guys.
Eric
If I'm not mistaken, the last update via email was about 10 days ago so without further delay this is what's going on with the boys. Both have had a great 5 days or so and we couldn't be happier about it.
Owen is up to full feeds now, which for him is 17 cc's every three hours. That means that as of today, he's 100% reliant on his Mom's breast milk for his nutrition. His PIC line has been discontinued but remains in his arm for the time being just to make sure he's tolerating his feeding. If all goes well for the next 24 hours or so, he'll get that removed. That will be HUGE because that will greatly reduce his risk of infection going forward. His weight last night was 1,450 grams, or 3 lbs, 3 oz. We found out yesterday that he absolutely adores his pacifier - something he tolerated before but never really took to. It's one of those behaviors he'll start developing as he matures and becomes more like a full-term baby and less like a super preemie. He's also been weaning his ventilator with some pretty big jumps in the last 24 hours so hopefully he's on his way to extubation as well.
Liam continues to do really well following his surgery. His belly looks considerably better and he has passed a lot of stool out of the stoma that was created (routing the intestine out of the side of his belly). After the surgery, he had a lot of edema and gained a significant amount of weight, which is normal following abdominal surgery. He gained 25% overnight (went from 1,200 grams to 1,500 grams). He has finally shed all of that edema and fluid weight and he weighed in at 1,330 grams last night, or 2 lb, 15 oz. More importantly, he's responded so well to his abdominal surgery that he has been introduced to feeding - a very little bit, but food nonetheless. And it couldn't have come on a better day - he got his first cc of breast milk on Thanksgiving Day! He has tolerated it well (he only gets 1 cc every 12 hours) and the doctors may increase it to 1 cc every six hours in the next few days. He's also weaning his ventilator with some pretty big jumps of his own and he'll get an echocardiogram this week to determine if that PDA is still large and requires ligation or if it's closing. If it's closing, the plan may be to wait a bit and see if it closes completely on its own. He was also stable enough for Mom to hold him on 11/25 for about one hour and twenty minutes so that was great too! Hopefully there's a lot more holding for both of them in the future!
That's it for now.
Regards,
Eric B. Damko
The Damko boys have had a GREAT day today!
Owen extubated himself this morning around 8:15 AM and has since been breathing on his own with a little help from a high-flow nasal cannula. It is so great to see his whole face (it's a little obstructed by the nasal cannula) and even greater to see his little lungs doing all of the work on their own! Since he had been doing really well on his ventilator the past few days, the doctors told us that if and when he extubates himself (he tends to pull on his tube) again they would let him try doing it on his own and see how he fares. There's obviously a chance that he's not quite ready and make end up back on the ventilator, but this is a HUGE step in the right direction! In addition, he had his PIC line removed yesterday since he's been tolerating his feeds well, so as of right now, he has no IV lines or ventilator tubes in him so his risk of infection has exponentially decreased in the last 24 hours. He has his first eye exam today (standard for preemies) so hopefully they find nothing out of the ordinary there and we'll keep marching.
Liam is also having a great day. His lungs have historically been better than Owen's and the doctors are saying that if and when he extubates himself again they'll try to leave him off of his ventilator as well. He's still on his ventilator at the moment simply because he hasn't pulled it out yet, but I suspect that it will come out in the next 24 hours or so. The results from his echocardiogram from yesterday came back last night and showed a "small" PDA versus his previously "very large" PDA so what that means is that the doctors are not going to ligate him and see if it continues to close on its own. We are optimistic that it will do just that! He has also tolerated his feeds of 1 cc every 12 hours so well that they moved him up to 1 cc every six hours yesterday (or maybe it was Monday afternoon) and now that he's done really well at that they've increased him to 1 cc every four hours. The surgeon that operated on his belly last stopped in on rounds yesterday and examined him and was very pleased with his progress and says the plan is to get him to 2,500 grams and then they'll go in and fix him up. If we're lucky, that will be the last surgery for either of them. He also has another eye exam today (his third one since he had two while fighting his yeast infection earlier) and since the last two were good, we have no reason to believe we'll get anything but good news on this one as well.
That's all for now.
Regards,
Eric B. Damko
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