Tuesday, December 30, 2008

Mixed Emotions

My heartache and anger absolutely consume me tonight. I'm heartbroken that in the midst of recovering from major brain surgery we were given the news that Logan's ROP has progressed from Stage 1 to Stage 3 (with plus disease) in his right eye and stage 2 in his left and our precious baby was forced to undergo laser surgery on both eyes this afternoon. I'm angry because I just don't understand - how much pain and suffering can one innocent soul endure in only 3 months on this earth? Sadly enough, my faith seems to be crumbling as I just can't understand how or why God can subject a child to such misery and strife. When is this sweet boy going to catch a break? I've been trying to stay positive and simply be thankful that he has survived this whole ordeal but I feel absolutely broken and I can't even bear to think about how my Logan is feeling tonight. I know he is a fighter and will get through every single obstacle that gets in his way but I would just like to see him get through something, anything at all, that he doesn't have to fight so damn hard for. Why can't anything be easy for him?? The only good news we received is that he will be transported back to Pennsylvania Hospital to be with his brother tomorrow. I'm so relieved that he will be back with his primary nurse who loves him and who he loves because I think love is just about the only thing we can offer him right now to make him feel better.

On a much brighter note, we got the stunning and blissful news this morning that Landon will be coming home with us next Tuesday!!!!! I think I am still in shock and don't think I'll fully be able to absorb this news until he's actually at home with us and even then I'll probably struggle for a few days to accept that it's real and he's finally all ours 3 months and 1 day after his birth. I will provide more discharge details tomorrow or later this week (as well as updates on shunt & eye surgeries), I'm just not up to writing too much at the moment. I'm really struggling to sort out these conflicting emotions tonight as I'm so absolutely elated about Landon coming home so soon but overcome with grief about Logan's continued struggles.

Going Well So Far.....

What a day we had yesterday. Hopefully that is the worst of the pain, fear and sadness that the Michalanko family will ever know. Not a surprise to anyone, our sweet boy made it through the surgery with absolutely no problems. He was wide awake sucking his binky and checking things out before they took him away, he's so smart he actually puts his little hand up all by himself to hold the binky in his mouth, it's incredible. In any event, the surgery itself only took about an hour and it was undoubtedly the most terrifying hour of our lives. He came out of surgery still on the ventilator and he remains on the ventilator this morning. The respiratory team has been sticking his heel to get blood gases overnight to check is Co2 levels and they are stable (Co2s in the 50's) but he is not really awake yet so they are hesitant to wean his settings or attempt to extubate him yet. Because he is still not fully conscious, his drive to breathe on his own is still weak and he is perfectly content riding the vent at the moment (meaning he's not really breathing over it but instead letting it do the breathing for him). Of course we are praying that doesn't last for too long because he longer he stays on it, the more difficult it can be to wean him off it and not only is it causing additional lung damage but the increased oxygen can cause more problems with his eyes (ROP that I mentioned a few posts ago). He opened his eyes a few times last night and was moving around occasionally and once he realized that breathing tube was back down his throat, he didn't like it one bit and began gagging and trying to pull it out (a good sign). He also spit up a few times but the doctors said this is perfectly normal and they are not concerned about it. It has certainly stirred up bad memories seeing him back on that ventilator and dealing with blood gases and vent weans and both Logan and I are going to fight like crazy today to get him off it and back on his cannula.

He has been NPO (meaning no breastmilk and only clear IV fluids) since 3 am Sunday morning and we are all eager to get him back on his bottle feeds so he can gain some critical weight and strength to aid his body's recovery.

His head circumference has dropped slightly and hopefully will continue to do so if the shunt is working properly and draining the CSF into his abdominal cavity. He has a large incision wound on the left side of his head along with two large bumps where the double resevoir was placed in his ventricle and then you can see the plastic tubing that was channeled underneath his skin down his neck and chest and then there is a smaller incision on his belly where the plastic tubing is coiled in his abdominal cavity. Essentially the shunt's purpose is to drain the excess CSF from his brain and into his belly where it can be harmlessly reabsorbed by his body. The doctor indicated there was a large amount of pressure being exerted on Logan's brain from the hydrocephalus so this should serve to be of great relief to any headaches our precious baby may have been suffering.

It was an absolutely excruciating day for me as well as my physical health took a turn for the worst as the day progressed. I hadn't slept much because we had to wake up at 6 am on Sunday morning for Logan's transport to CHOP and then we awoke at 3:30 am yesterday morning to be at the hospital by 5:30 am for the surgery so I began feeling extremely ill as the day wore on. I was forcing myself to eat (since I am pumping for my boys and my nutrition is vital to their well being) and I suppose because my stomach was in knots all day and not really interested in food, it didn't take very well to it. We didn't arrive home until 9:30 or so and the minute I walked in the door, I was forced to run to the bathroom and threw up everything I had eaten that day. I then crawled into bed and passed out cold until this morning, thus the reason I couldn't update the blog last night. I feel much better today though and am ready to push on through another day of the unknown with our boys.

On the other side of the city, our Landon continues to do wonderful and took every single one of his feeds yesterday by bottle so they have removed his OG tube and his beautiful face is now completely free of everything, no cannula in his nose and no feeding tube down his throat!! It looks like he may be home with us as soon as the end of next week, or soon thereafter, though it maybe on a monitor since he is still having 2 or 3 bradys a day. I can't even conceive of that thought right now because I don't want to get my hopes up until I know for certain it's really going to happen.

So we are not out of the woods yet until we know that Logan's shunt is working properly and no infections are present and the next 48 hours will be critical in telling us that. Then we can focus on getting him off the vent, back on his breastmilk and back to Pennsylvania Hospital with his brother who misses him dearly. Please continue to pray for our remarkable little boys.

Sunday, December 28, 2008

Surgery Tomorrow

We received the call this morning at 6 am that Logan would be moved to CHOP immediately and we managed to jump out of bed and rush over there to spend a few minutes with him before the transport. He said goodbye to his little brother (as did we) and the EMTs whisked him away to his new home for the forseeable future. I was permitted to ride in the ambulance with him, which was of great comfort to me as of course I was overly concerned that the move would be upsetting for him, but he slept through the entire ride and didn't even seem to notice his new surroundings. Upon arrival at CHOP he received a battery of tests and exams, most important being a CT scan of his brain. We then spoke to the neurologist who informed us that Logan will indeed need a shunt and the surgery will be first thing tomorrow morning (7:00 am). So once again, at only 12 weeks old, our sweet boy will undergo his 2nd major surgery with the placement of a VP shunt into a ventricle in his brain.

He was such a trooper all day, he did so well on the cannula (1 1/2L flow and 32% oxygen), only de-satting into the 80's occasionally, didn't have any bradys or apnea spells and took his bottle at every other feed. After the drama died down, Logan and I got to spend the entire afternoon and evening snuggling and sleeping together, it was actually one of the most peaceful days I've spent with him since his birth. While he was very calm and cooperative all day, he definitely seemed somewhat sad and I really think he missed his brother and primary nurses at Pennsylvania Hospital. His favorite primary, Lisa, is going to take time on her days off to come visit him tomorrow or Tuesday and I couldn't be happier about it (and I told Logan about it and he gave me a little smile as well). I really could go on for hours and hours about the love, dedication, and devotion these nurses pour into our babies but
words just couldn't do them justice. What I can say, without hesitation, is that neonatal nurses are undoubtedly one of the most undervalued and underappreciated contributions to this world and I mean that with all my heart.

In the meantime, Daddy went down to Pennsylvania Hospital later in the day to visit our other sweet angel, who is doing wonderfully. He is still completely off the oxygen and took almost all of his feeds today by bottle, a tremendous accomplishment as this is really the only thing keeping him from coming home with us. He is chugging right along and is more than willing to take the backseat to his brother while Mommy and Daddy focus on getting him through this surgery. At such a young and tender age, one of our sons' astounds us with his unrelenting perseverance, while our other son humbles us with his quiet gracefulness. I don't know what I did in this life to deserve two inspirational little boys but I can only thank God for choosing me to be their mother.

I will try to post a short update tomorrow night if I'm not too exhausted just to let everyone know how the surgery went. Please say extra prayers tonight for our little one.

Saturday, December 27, 2008

Logan Being Moved to CHOP

Well, it was a particularly emotional Christmas day for me as I think the volatility of this whole experience is really catching up to me (or perhaps I’m just at my breaking point and unable to control the emotions that I’ve been keeping pent up for so long). I spent this joyous family holiday without the most important part of my family and it just absolutely broke me. We tried to make the best of our situation on Xmas morning - Steve bought a big bag full of toys and books and we brought them into the hospital to show the boys, we read them “The Santa Mouse” and dressed them in little Xmas onesies and Santa hats. But in the end, the magnitude of our situation just hit me really hard and I couldn’t shake it. It certainly didn’t help matters that Logan had a terrible day – he was lethargic, wouldn’t take his bottle and had a bad de-satting episode into the 30’s and his nurse had to bag him. The day only got worse when the doctors advised us that tomorrow Logan will be separated from his little brother, the nurses with whom he’s become attached, and the only home he’s known since his birth and moved to CHOP. His condition will be assessed and evaluated by the chief neurologist and he will make the ultimate decision of whether or not they will go ahead with the shunt placement surgery given that he is now well over the required minimum weight of 2000g (app. 4 lbs. 7 ozs.). Logan’s doctors have been in constant communication for the last few weeks with the CHOP neurologist who will be performing the surgery, though he has not considered Logan's situation to be of particular concern or one that has needed immediate attention. Reason being is that miraculously enough, Logan is not showing any signs or symptoms that he is in pain or being overly affected by his hydrocephalus – he is on low oxygen, is bottle feeding, growing at a normal rate and behaves completely appropriate for a baby his age.

The alternative to the surgery would be to hold off, send him back to Pennsylvania Hospital with his brother and continue to simply monitor his head size and draw the extra CSF with the spinal taps (which they have been doing 2-3 times a week for the past month), though that is highly unlikely at this juncture. With each spinal tap they perform on him, there runs a great risk of infection and if he were to become septic, they would neither be able to perform the shunt surgery nor would they be able to do a tap to relieve the fluid and pressure build up and this could be extremely dangerous for him. The doctors have expressed numerous times how miraculous it is that he hasn’t acquired a single infection from the dozens of taps he has received in the past 2 months. But of course nothing that Logan does surprises me anymore, he lives by his own set of rules. In any event, the hope was that he would eventually “outgrow” the hydrocephalus and the drainage problem would resolve itself as he gained weight and grew stronger, thus eliminating the need for the taps or the shunt. Unfortunately, that doesn’t appear to be the road on which we are traveling. And so, we push on as a family through yet another difficult obstacle with our fierce little fighter Logan leading the way for all of us.

It's been another steady week for our little men as they continue to make tremendous strides in their growth and strength. Logan now weighs an incredible 5 lbs., 2 ozs. and Landon is up to 4 lbs., 11 ozs - that's almost 10 pounds of baby!! They really are turning into such little chubbers, I just can’t get over it. As they grow bigger and stronger, so do all of their vital organs, including their once frail and delicate lungs and their recent respiratory efforts are certainly a testament to that fact. They both graduated off the high flow nasal cannula last week and have been on the conventional cannula, with Logan being at a 1 ½L flow on 30% oxygen and Landon being at a 1L flow with only 21% oxygen. Landon’s de-satting episodes have significantly decreased over the past few days and yesterday we got a nice surprise when we arrived at the hospital to see Landon’s handsome face completely free of his nasal cannula. He is no longer on any oxygen and is breathing with absolutely no assistance. He did great with only a few de-sats into the 70’s but they were quick ones and he would always bring himself immediately back up into the 90’s where he belongs. Barring any unforeseen setback, I don’t see any reason why he won’t be home with us in 3 weeks around the time of my due date (January 19th). What an absolutely terrifying and exhilarating prospect – I will barely even allow myself to process that thought because I have become so programmed to just take things one day at a time. The minute you begin looking ahead to the future, something unexpected occurs to give you a violent shove back into the reality of here and now.

They both continue to take the bottle at alternating meals with every other feed still being given by gavage feed through their OG tube. Of course it is still a roller coaster experience with some feeds being better than others. Logan is slow to catch on at times, it usually takes him a few minutes to realize what he’s supposed to be doing but once he gets it, there’s no stopping him, he usually finishes his entire bottle without even needing a break. He has done very well at learning how to pace himself and to stop sucking and take a few breaths when he’s tired. Landon has no problem figuring out what to do with his bottle but his biggest problem is learning to slow down – he’s so eager to eat that he will gulp down half the bottle and then choke on it and de-sat into the 70’s. Reflux is an ongoing problem with which they both deal so it’s important to keep them in an upright position during and after each feed because they are prone to spitting up (usually Landon) or de-satting. Logan is now receiving a little over 1 oz. (37 ml’s) of breastmilk with each feed and Landon is getting 38 ml’s.

Tonight is the last night that Landon and Logan will spend together for quite some time and the thought that they will both be alone tomorrow is just breaking my heart all over again. I’m finding that as I continue to write this blog each week, it is becoming increasingly difficult to express in words the gamut of emotions I’m trying to sort out within my head and heart. The profound sadness, exhaustion, love, pride, grief, anger, fear, anxiety – it is all so overwhelming. I pray that the Lord will watch over Logan and keep him safe during these next few days as I imagine they will be terribly traumatic and scary for him.

Thursday, December 25, 2008

Merry Christmas

Logan on left and Landon on right

Our 1st Christmas family photo
(Mommy holding Logan and Daddy holding Landon)

Aunt Jill with Landon and Mommy with Logan

Logan giving us a little smile

Mommy showing Logan one of his Xmas presents

Landon taking a nap with Daddy (above)

Daddy and Landon spending some QT together (below)
It has been a long emotional day for me and I'm just too exhausted, both physically and mentally, to post a full update tonight but I wanted to share some recent photos of our little men.

Wednesday, December 17, 2008

L&L in a Crib Together!!!

With last night’s sad events still weighing heavily on our shoulders, we couldn’t have been more excited today to hear and then see with our own eyes that our baby boys have FINALLY been moved out of their isolettes and into a crib TOGETHER!! What an absolutely heartwarming and comforting sight for us to see our boys snuggling together out in an open crib. I’ve become so accustomed to asking a nurse for permission to take them out of their isolettes when I want to hold them, it seems surreal to me that we can now talk to, touch, or pick them up whenever we want to. The nurses swaddled them together so their body heat would help to keep both of them warm and they seemed to love it. Of course they were occasionally batting each other in the eyes and mouth and one of them would get mad and turn bright red, which provided a nice laugh for Mommy. I was absolutely exhausted today and had a terrible day at work but as soon as I walked into that NICU and saw them together, it was like nothing else in the world mattered. They continue to sustain and carry me through this awful nightmare.

Earlier this week, our little men had yet another important eye exam as they are now getting to the age where the damage caused by their prematurity will become evident. This disease is called Retinopathy of Prematurity (ROP) and virtually all micro preemies born at the age and weight that our boys were will suffer some degree of it. When babies are born prematurely, the blood vessels of the retina are underdeveloped and this can lead to the development and growth of abnormal blood vessels which thereby cause bleeding and scar tissue. This scar tissue can eventually attach to the retina and pull it to the point of detachment, thus causing blindness. The boys have been receiving bi-monthly eye exams for the past few weeks and the only diagnosis they’ve received has been that their eyes are still “too immature” to determine anything. However, on Tuesday Logan was diagnosed with Stage 1, Zone 2 (no plus disease) in his right eye and his left eye is still “immature.” ROP is classified using 5 stages, with stages 1 & 2 being mild and usually resolving on its own without the need for further treatment while stages 3 & 4 are much more severe and require the need for laser therapy. Stage 5 usually leads to blindness. There are three zones which are used to describe the areas of the retina that can be affected by ROP – Zone I refers to the most anterior zone of the retina while Zone III is the posterior zone. In general, ROP that involves a more posterior zone of the eye is more severe than ROP that involves a more anterior zone (e.g. Zone I disease is generally worse than Zone II). So Logan’s ROP is still at the mildest stage but has moved from the back of the retina into the middle zone. The disease is progressive so they will both have another exam in 2 weeks and we can only hope and pray that Logan’s eyes will remain relatively stable. I can’t bear to watch him struggle and fight through yet another terrible consequence of his prematurity. I’m hoping we can be spared on this one.

Boys doing Great....Sad Day for Us

My faith really is crumbling right now. Our boys are doing great but it’s midnight and Steve and I just returned from the vet where we had to put down our cat Dutch, who has been in my family for 15 years - he suddenly developed saddle thrombosis and his hind legs became paralyzed. The hits just keep coming. I’m not sure why God would chose to take him now or how much more I can possible bear before I just break.

I spent the last two nights writing this week’s post (it’s taken me so long b/c there’s so much to update on) and actually had to leave tonight for the vet when I was in the middle of finishing it up so I figured I would go ahead and just post it now even though it’s unfinished. I’ll try to post again later this week with the additional updates. In any event, here’s a start to the past week’s update on the boys:

What a busy week the Michalanko boys had, I'm not quite sure where to begin! This weekend was a particularly special one for numerous reasons. Foremost, at the ripe old age of 10 weeks, Landon and Logan were formally introduced to almost all of their grandparents!! On Saturday, Grandpop Russ and Grandmom Helen both had the distinct honor of being the first family members (other than Mommy and Daddy of course) to hold our little men and the boys just loved it! Grandpop Russ was so excited to sit with Logan and did so for well over an hour talking to him and telling him lots of jokes and repeatedly making him smile. Grandmom Helen held Landon and hummed songs to him as he slept, although he made sure to wake up for a few minutes to get a good look at his grandmom. On Sunday, the boys were finally able to meet their Nannie as my mom held Logan first and then Landon, and much the same as on Saturday, Logan was wide awake the entire time staring at his Nannie while Landon spent most of his time with Nannie sleeping. It truly was a comforting and emotional moment for me to finally see my mom, who is also my very best friend, holding my two sons for the very first time.

Another exciting event of the weekend was that Mommy and Daddy were allowed to give the boys’ their very first tub bath on Sunday night, what an indescribably wonderful moment for us as a family. We bathed Logan first and Daddy held him upright while Mommy washed his little head and body. Of course I was overly concerned about hurting my delicate little boy so I moved a touch too slow and Logan gave me a few good cries to let me know he was cold and I needed to hurry it up! Landon was next and I held him while Steve gave him a good washing, being careful to move a little quicker this time and spare him the prolonged exposure to the chilly air to which poor Logan was subjected!! He definitely enjoyed it a bit more than Logan did but was sure to still let out a few strong cries when he was unhappy. It almost brought me to tears just hearing their beautiful little cries and seeing our 4 pound sons (yes, they’re both around 4 lbs. now!) act and look just like any baby would when he’s getting his first bath. I’m aware this might sound strange to some people, but you have to remember that when we first met our sons, they were barely bigger than the palm of our hand, their skin was translucent and painful to the touch, every bone in their body was seemingly visible, their eyes were fused shut and covered by goggles under a phototherapy light, they couldn’t cry because of the breathing tubes down their throat, they had leads all over their chests, wires running in and out of their belly buttons and IV’s in their arms and/or legs. I certainly didn’t feel like a mother and my sons certainly didn’t look or act like any baby I had ever seen. Now, 10 weeks later, to bathe my sons completely free of all of the wires, tubes and IVs, to hear them cry while we’re cleaning the little rolls of fat under their chins, to wrap them in a towel and hold them while we dress them in their pjs….it was a moment that, on some of our worst days, I wasn’t sure we’d ever see.

Of course I probably annoyed the nurses (and my dear husband) with the camera and all of the pictures I wanted taken but I just wanted to ensure we saved this tremendous night. Again, most parents have the privilege of bathing their child for the first time in the comfort and privacy of their own home and it’s a tender moment that a mother and father share, and one that I feel should be remembered with pictures. I didn’t want our experience to be overlooked or feel any less significant simply because we couldn’t experience it the way most other parents do. I suppose I’m simply trying to somehow regain and maintain some semblance of normalcy in our unfortunately abnormal situation and if we were at home during their first bath, I would have taken dozens of pictures so why should it be any different for us in the hospital?

Well, believe it or not, there’s MORE good news to report! While Landon and Logan are still getting their breastmilk predominantly through gavage feeds, they are taking the bottle for their feeds 2 times every 24 hours! They are both doing a great job coordinating the suck, swallow, breathe routine and although they don’t always finish the entire bottle (they tire easily), they sure do give it a valiant effort. Logan usually has a difficult time getting started but once he catches on, he houses his bottle in no time flat! Landon is very inconsistent in that during some feeds he’s extremely slow and not interested in taking too much, while at other times he gulps down half his bottle before we even have a chance to stop and burp him! For the next few weeks that is the way we expect things to go – they will have good feeds and they will have bad feeds, and that’s ok. We are pleased and excited after the good feeds and hopeful after the bad feeds that the next one will go better.

Now that they’re both up to over an ounce of breastmilk every 3 hours they are making huge strides in weight gain - Logan is up to 4 lbs., 3 ozs. and Landon is a few ounces behind at 3 lbs., 14 ozs. Although it may seem like Logan has a leg up on Landon, it’s not quite as drastic a weight difference as it seems since we must account for the extra fluid in Logan’s head from the hydrocephalus and the fact that he has edema (quite common for preemies) and is a bit puffy in his lower extremities.

Finally, since the boys are now over 2 months old, they have both started receiving their vaccines this week. They will be getting five of them prior to their discharge from the hospital – Hepatitis B, Polio, Haemophilus Influenza (Hib), Diphtheria, Tetanus & Pertussis (DTap) and Pneumococcal Conjugate. Thus far, they have received all of them except the Hib and Hep B. They have both become anemic again and are in need of another yet another blood transfusion so they have discontinued the vaccines for the time being and they will get the remaining two closer to their time of discharge.

Just a brief detail on anemia – all micro preemie develop it due to many factors (ie- premature babies’ bodies do not make many red blood cells and the ones they do make don’t last very long) and it is treated through blood transfusions, of which both Landon and Logan have already received half a dozen in their short lives. Around 2 months after birth, preemies should begin making their own red blood cells at a quicker rate and no longer need the transfusions. However, for whatever reason, the boys are still struggling with this at 10 weeks of age. Landon, in particular, has been showing signs that his anemia is affecting him in that he’s extremely pale, tachycardic, and has been having an increased number of bradys, therefore needing some additional oxygen support. He is still on 21% but his nasal cannula flow has been bumped up to 2L flow, whereas his big brother Logan is down on 1L flow (although his oxygen requirements are a bit higher at 23-25%). The doctors are extremely cautious about simply giving him another blood transfusion because at his age his body needs to learn to make its own red blood cells, but in the event that his symptoms continue, Steve & I went to Red Cross tonight and donated our own blood in hopes that they could use it for their next, and hopefully last, transfusion.


Sunday, December 7, 2008

Landon Takes a Bottle!!

Pic #1 is Mommy bottle feeding Landon for the 1st time!!
Pic #2 above and #3 below is Landon spending time with Daddy

Pics #4 & 5 below are Logan

Pic #6 below is Logan (left) and Landon (right) catching some zzzzz's together with Mommy

Well, the excitement resounding through my last post was short lived. Logan's doctor ordered him back in the isolette after only 1 day of freedom in his crib. He did extremely well for the 24 hours he spent in his new home, maintaining his body temperature as required and showing very little, if any, signs of stress from the noise, lights and chaos of the NICU to which he was now exposed. However, he lost some weight overnight so the doctor decided this factor alone was reason enough to return him to the confines of his isolette and his world of plastic walls; the only being within which he has existed since his birth 65 days ago. The reasoning behind this is that when Logan gets cold outside of the isolette, his body must burn precious calories to warm himself back up, whereas when he's in the isolette, the isolette monitors his body temp using a probe and if he gets too cold, it will adjust it's internal temperature to rise and warm him. His weight loss was nominal (9 measly grams) and not unusual for him (since they both lose weight some nights and gain large amounts other nights) but the doctor on call last week decided his plan of care should be to help him gain weight so he will be big & strong enough to undergo the VP shunt surgery as soon as possible and they will not do anything that carries even a remote possibility of inhibiting his growth. Alas, our sweet boy is back in his isolette for the time being and we're not sure if the doctors are going to let him back out into the crib before the surgery or if he will remain there until they move him to CHOP. Of course we are all hoping for the former.

On an exciting note, we hit another huge milestone yesterday when mommy got to give Landon his first bottle feed and he did so well!! He mastered the suck, swallow, breathe routine down pat on his very first try - he didn't choke at all and his vitals remained perfect the entire time. He only received 10 cc's of his feed through the bottle (and he took every last drop) and they administered the other 20 cc's through his OG tube as they usually would. The docs are slowly weaning him onto the bottle so for the time being, we will bottle feed him once a day and only 10 cc's at a time (with the balance fed through his OG tube) and they will gradually increase the volume as well as the frequency of the bottle feeds until he no longer needs the feeding tube at all!!

I also tried to give Logan his first bottle feed yesterday but unfortunately he didn't want any part of it - he kept spitting it out and choking on it and then he just wouldn't open his mouth at all for mommy. We were going to try again today but I was a little concerned because he just didn't seem to be himself and we didn't want to stress him out any further so we will give it another shot tomorrow evening. He was tachypneic (elevated respiratory rate) and was listless and lethargic as I held him when he is usually very active and alert. I think, or perhaps hope, he was just absolutely exhausted. He had a rough couple of days and needed spinal taps both yesterday and today. Yesterday's LP only yielded 2 cc's, which is an extremely small amount for him, and today his head measurement hadn't gone down at all and his blood pressure spiked so the doctors thought it could be a function of pressure building in his head. Therefore, they did another one today and were able to pull an encouraging 7.5 cc's. He was such a champ during the LP's, he barely had any bradys and just laid there sucking on his little pacifier. My little peanut is so wonderfully strong, he inspires me in ways I didn't even think possible.

They both received their first physical and occupational therapy evaluations yesterday and beginning next week, they will receive therapy 1-3 times a week. We haven't been able to speak to the therapist yet but according to the brief report we received from the nurses, Logan's muscle tone is stiff and rigid while Landon's is somewhat limp, although he seems to be tight in his shoulders and hip joints. I'm not sure yet exactly what their therapy will entail but I know it will probably be an important part of each day, week and month for the rest of our lives.

They are both still on the high flow nasal cannula with Logan on a 3L flow and Landon on a 2.5L flow. Logan's oxygen support is down to 23%-28% while Landon is typically always on 21% except during his feeds when he tends to de-sat and he needs to be turned up a bit. Logan continues to pull away from his little brother in terms of weight gain - he is now up to 3 lbs., 12 ozs while Landon is at a respectable 3 lbs., 7 ozs.!!!! Looking back on those first few days and weeks of their lives, I couldn't even begin to imagine a time when they would be well enough to come home to us and now they are both only a few ounces away from 4 pounds, close to being free of their isolettes and starting down the path towards full bottle feeds. They have fought through so much with all of the odds against them and have come so far. The scary thought is that I know we still have such a long and trying road ahead of us...but I know with all of my heart (and have seen it firsthand with my own eyes) that if anyone can overcome and persevere through adversity, it's our little boys.

Thursday, December 4, 2008

Logan's Out of the Isolette!!

Logan's on the left and Landon's on the right

The little engine that could strikes again!! Our precious Logan is out of his isolette and into a crib, what a beautiful sight for mommy and daddy!! I don't have time to write more tonight but I was just so excited I had to post some pictures for everyone. I'll give a full update when I have some free time this weekend. Our little angel just continues to blow us away with his determination and resilience, no one is going to hold this little boy down. He is so amazing!!

Sunday, November 30, 2008

8 Weeks Old and 3 Pounds!

Add Image
Pic above is Daddy w/Logan (left) & Landon (right);
Pic #2 to the left and #3 below are Logan

Pic #4 to the left is Logan - he's pooped after a long day;
Pics #5, 6 & 7 below are Landon

Logan and Landon are 8 weeks old tonight and have been in the NICU for 56 days - what an exhausting, emotional and heartbreakingly beautiful journey it's been. The boys are making tremendous progress and are well on their way to joining us at home in a few months. Thanksgiving came and went and I realized more than ever this year how much I have for which to be thankful. Therefore, I've decided to focus only on the positive in this post, no bad news (for once)!

Foremost, in the battle of the weight gain, Logan remains the heavyweight champion, coming in at 3 lbs., 3 ozs with Landon not far behind at 3 lbs., 1 oz! It's amazing how much they've both grown and finally look and act like "real" babies (just miniature versions!) now that they are filling out and are free of many of the wires, tubes, face masks, etc. that plagued them for the first 8 weeks of their lives. One of the greatest parts of the boys being off the ventilator is that now that they don't have the ET tube down their throat, I have been able to hear both of them cry for the first time. Although it breaks my heart to see them upset, it truly is the sweetest sound I have ever heard. We were deprived of that special moment, that feeling of relief and release that overcomes a parent when your baby lets out that loud and encouraging cry at birth and you hear his or her voice for the very first time. So many parents take that moment for granted, but like this entire pregnancy and everything my boys will ever do in this life, none of it has been or will ever be taken for granted. And for that, I can only be thankful.

In terms of their respiratory efforts, as I detailed in my last post, Logan was finally taken off the ventilator and moved to CPAP last Sunday. Well, he was doing so well that he only spent 2 days on it until he graduated to the high flow nasal cannula like his little brother, where he has stayed since last Tuesday! His oxygen support generally ranges from 27% to 35%, which is great for only being off the vent for a week. He was initially on the 5L flow cannula but they weaned him down to the 3L flow yesterday (which Landon is on) and he seems to be tolerating it well. Landon is still on the high flow cannula and isn't requiring any supplemental oxygen (is on 21% oxygen, which is room air) except during his feeds when he de-sats alot due to reflux problems. The next step for both of them will be when they are finally breathing entirely on their own with no assistance.

I feel so silly now for spending those sleepless days and weeks worrying Logan might never get off the vent. Above all else though, I feel ashamed of myself for not having the faith in him to believe and know he would fight his way off that vent like he's fought through every other obstacle he's faced in his 56 days of life. As I sit here trying to express my feelings in this post, I still cannot come up with words strong enough to express the absolute depth of my love and pride for him and in him. In BOTH of them.

Steve and I have both been holding the boys as much as we can and changing their diapers each day and this week I am going to give Logan a bath for the first time (not his first bath, but my first time giving him one)! I am so nervous because I know he doesn't like it very much and I worry as usual that I'm hurting or upsetting him, but at the same time, I'm extremely grateful for any time that I can spend with him right now. It's not ideal and certainly not what I imagined, bathing my son for the first time in the hospital, but it's the hand we were dealt and I truly believe that before we know it, he'll be at home playing with his brother in our own big bathtub!! These are the thoughts that I try to focus on to get me through each day, week and month.

Monday, November 24, 2008

The Good, the Bad and the Beautiful

Pics 1 & 2 above are Logan (left) and Landon (right)
before they came off the vent & CPAP;
Pic #3 to the right is Logan & Landon hanging out together (Logan in beige & Landon in stripes)

Pic #4 above is Landon on nasal cannula with only the tubes in his nose;
Pic #5 to the left is Landon after coming off CPAP and before going on nasal cannula;
Pic #6 below is Logan on CPAP (sucking on his pacifier);
Pic #7 below is our first official family photo

It was a great week in the NICU for the Michalanko boys - almost perfect. ALMOST, but not quite...

Bad news first of course. After a somewhat uneventful and tranquil week in the NICU with no major setbacks, we were once again given a fierce shove back into reality on Sunday with the realization that Landon was sick and might have an infection. He began exhibiting symptoms late Saturday afternoon and into the night but seemed better Sunday morning. But, much like many things NICU-related, we didn't get comfortable for too long before he took a turn for the worse in the afternoon. He became extremely pale & lethargic and began repeatedly desatting and having brady episodes in clusters (meaning his heart rate was dropping to dangerously low levels over and over again, one after another). He just laid there, barely moving, looking so weak and sickly and the only thing I could do was stand there and watch in tears. To say it was one of the worst feelings I've ever experienced doesn't even begin to convey how it feels to see your child sick and struggling and know there is nothing you can do to allay his pain. All I wanted to do was hold him and tell him mommy was there so he didn't look so scared and sad, but in his state, it probably would have done more harm than good for me to even touch him. And therein lies our existence as parents in the NICU. In any event, they took blood cultures and started him on broad spectrum antiobiotics to begin treating whatever he may have and then performed a lumbar puncture to test for bacterial meningitis. Unfortunately, the tests came back abnormal (his white blood cell count was high) and the doctor is speculating that what is ailing our dear Landon is indeed meningitis. My poor babies just can't seem to catch a break. The course of action at this point will be to simply monitor him and continue to treat him with the antibiotics for 10-14 days. This illness can be fatal in preemies or cause brain damage resulting in long term disabilities such as hearing loss, blindness, developmental delays, etc. but the doctor advised me this was highly unlikely given that his WBC count was only 27, they caught it early and began treating it immediately, and his recovery time was so quick (babies who die or develop brain damage from this usually have a WBC count in the thousands and don't respond to the antibiotics). He is looking and behaving much better today, isn't having the cluster brady episodes and is doing wonderfully in terms of his respiratory efforts. We are praying he is well on his way to recovery.

Now that I've gotten the sobering news out of the way, it's time to brag about my boys! A week or so ago, Logan was put on a new upgraded ventilator that the hospital received from CHOP (our boys are at Pennsylvania Hospital on 8th & Spruce, which is an affiliate of CHOP) and he began improving almost immediately. His blood gases were consistently good each morning (C02 levels in the 50's and low 60's), his oxygen support gradually decreased and the doctors slowly began weaning his vent settings. Then on Sunday his nurse sent me a picture message of him and he was no longer on the ventilator and instead on the CPAP like his little brother!! I prayed countless hours for this day to come and spent even more hours worrying that it may never come and when it finally arrived, we were so caught up with Landon's illness that our sweet Logan's big day was overlooked and I feel awful about it. He really is surprising everyone with how well he's doing off the vent though - his blood gases have been great and he's only requiring between 27% and 32% oxygen. I only wish he could understand just how miraculous and special he really is and how proud I am to be his mommy.

Not be outdone, even though he's fighting the meningitis, his little brother Landon shocked Mommy and Daddy today by coming off the CPAP and onto the high flow nasal cannula!! It just blew me away to see him laying in his isolette with nothing on his handsome little face except the plastic tubes in his nose...I just couldn't stop staring at him!! He's doing remarkably well - he's on 21% oxygen, desatting very rarely (and when he does it's only into the low 80's) and he's only having bradys once every few hours. He has done a complete about-face since Sunday, it's hard to believe that he's still so sick.

They are both still tolerating their feeds quite well and gaining weight as they should be, although a few of Landon's feeds have been held in the last day due to some aspirates he was giving back. When babies are sick they shunt all their blood and energy to their crucially vital organs and the gut is not one of them so often times they will have problems tolerating feeds and the doctors do not want to push him by giving him too much volume. Therefore, Logan is now up to 24 ml's every 3 hours and Landon is at 21 ml's. Shockingly enough, our "little engine that could" Logan now weighs MORE than Landon, with Logan coming in at 2 lbs., 14 ozs. and Landon now lagging behind at 2 lbs., 11 ozs!! My my, how the tables have turned. We knew Logan wasn't going to let his little brother beat him at anything for too long!

Finally, Saturday was a particularly special day for us as not only did Landon and Logan get to spend some quality time together for the first time since their birth but Mommy & Daddy each got to hold both of them at the same time!! It was such a perfect day, the most content I've been in a long time. It was so incredibly sweet to see them laying next to one another in the same isolette, although I wondered (and worried of course) whether they were really aware or "remembered" who the other one was or if they were complete strangers to each other. Landon was out like a light and decided to drape himself all over his brother as he slept, while Logan just laid on his back with his eyes wide open looking around wondering why this other little guy had invaded his bed, it was so precious!! I was allowed to hold them together for a few hours and they both did so well with barely any desats and no bradys; it was so overwhelmingly peaceful and healing, it truly was incredible. I finally felt like a mother.

Last week it snowed for the first time this year (ok, it was just a light dusting) and I took a few pictures from our bedroom window. I'm not sure why, I guess because it was technically the boys' first snow, even though they can't see or enjoy it yet, and I was suddenly overcome with this feeling that everything was going to be ok and work out as God intended. I wanted to save that moment. If any good has come from this nightmare, it's that every little thing just seems magnified to me now, everything exists on a much grander scale and I appreciate it all so much more - God, my family, my friends. I could never get through this, nor could our boys, if not for all of them in my life. It's just a shame I needed something this heartwrenching to help put things in perspective for me.


Monday, November 17, 2008

Two & a Half Pounds!

1st pic is Landon with his CPAP mask off;
2nd pic is Daddy's first time holding Landon.

Pic to left is Landon's close-up shot;
Bottom two pics are Logan.

Landon and Logan are now 6 weeks and 1 day old, what a tremendous accomplishment! This past week since my last post has been filled with the usual ups and downs to which we have become accustomed.

First and foremost, some good news - Landon is still on CPAP and doing very well! He is on a relatively low amount of oxygen (anywhere from 25%-35%) and his blood gases have been great. I certainly don't want to jinx anything, but I think his ventilator days are a thing of the past! He is on the CPAP with a pressure of 6 at the moment and if he continues to do well, he will be lowered to a 5 or 4 pressure. After that, he graduates to the nasal cannula, which entails only small rubber tubes being inserted into his nose. What an amazing day that will be to finally be able to see his precious little face free of masks, wires and tape. But I digress....

It wouldn't be a week in the NICU without some bad news sprinkled into our story. Logan received yet another lumbar puncture last week as his head size continues to increase at a quicker rate than normal. The doctors were able to retrieve 5 cc's of spinal fluid and his head measurement actually decreased by 1/2 cm subsequent to the tap being done. The doctors have been in touch with the chief neurologist at CHOP in regards to the placement of a VP shunt and the only determination they can make at this point is that Logan must weigh atleast 2000 grams (approximately 4 lbs., 7 ozs.) before they will even consider performing the surgery. Unfortunately, it looks like Landon will be home with us long before Logan will. No matter, our little fighter (or "Braveheart" as my sister Jill calls him) will persevere and come through it with shining colors, as he always does.

On a lighter sidenote, the boys are both gathering quite a little collection of nicknames that I thought I'd share with everyone. Daddy likes to call them "C-Dubbs" (Logan) and "L-Train" (Landon). Logan's nickname came to light in the first few days of his life when he had an IV placed in his arm. The IV was held down with the placement of an arm board and a lot of tape and since Logan loves lying on his little belly, his arm would have to be laid out flat to the side and we joked that it looked like a little chicken wing. Thus, "C-Dubbs" was born. Daddy decided to name Landon "L-Train" after Lionel Simmons, a famous Philadelphia ex-NBA star. Reason being, when Landon was born, he was extremely long, with big hands and feet and all of the nurses remarked at his amazing length and how tall he is going to be when he grows up. Daddy is now certain that Landon will be our NBA star. As for myself, I have found myself calling them my "bubbies" and I have no idea from where I came up with that nickname! It just came out of my mouth one day when I was talking to them and it fit. Strangely enough, my mom calls them them "her little poopies"! It seems she's already earmarked almost every term of endearment for my beautiful neice Gianna and was struggling to find something special to call her very first grandsons. For some reason, that's what kept popping in her head. As I stated above, my sister Jill calls them "Braveheart" (Logan) and "Big-L" (Landon) since Logan has been our little fighter since Day 1 and Landon has always been our big boy. Along those same lines, my sister Crissy has refers to them as "Big-Ole" (Landon) and "Stringbean" (Logan) - those are obviously self explanatory! I'm sure as the weeks and months come to pass, they will continue to amass a plethora of affectionate little monikers.

Logan has weighed a few ounces less than his little brother Landon since birth but we were thrilled to discover this week that he has caught up and they are now the same weight....2 lbs., 8 ozs!! My babies are 2 1/2 pounds, can you believe it?? They are both tolerating their feeds wonderfully and the doctors are continuing to increase their volume, which is accounting for their healthy weight gains. Logan is now receiving 20 ml's every 3 hours and Landon is up to 21 ml's. We have been lucky in that, given the high rate at which their feeds are being increased, neither of them has developed Necrolitizing Enterocolitis (NEC), which is a terrible intestinal infection unique to micro-preemies. Hopefully, our babies will catch a break and that is one bullet we will dodge during our NICU journey.

I didn't think it was even possible, but I feel more incredibly proud of them as each day passes. They really are my heroes, in every way imaginable.