Chugging along....

We’ve had quite a few doctor’s appointments in the last few weeks which netted us some good news and some bad. First, the positive news: both Landon and Logan’s ROP has regressed and is well on its way to being gone. Of course there is a distinct possibility they will have complications with their eyes later in life (ie-need for glasses) and Logan’s peripheral vision is compromised (due to the laser surgery) but his central vision is intact and they are no longer at risk for blindness (a collective sigh of relief resounds through the room).

Landon also had a follow up appointment with the nephrologist and his blood pressure has stabilized since he was started on medication so fortunately they did not need to perform any further tests on him. He will continue to be monitored by both the nephrologist and urologist for the foreseeable future but we are hoping it won't progress into anything more serious.

Of course with the positive comes some negative. We visited the audiologist at CHOP and as we suspected (and dreaded), Landon was diagnosed with severe hearing loss in his right ear. In other words, he is not completely deaf in that ear but close to it. He will therefore be at an even greater risk for speech/language and development problems but we have already started working with the Early Intervention program so I am confident he will get the best help available. He will join Logan in a follow up appointment at CHOP ENT (Ear, Nose & Throat) to determine the cause, though the audiologist said she believes it is structural, not a result of the meningitis or brain bleed he endured in the NICU. (Logan is going to ENT for his weak left vocal cord from being re-intubated for the shunt surgery). I suppose all I can do at this point is to look for the silver lining and be thankful that he can hear perfectly with his left ear, right? Or perhaps that is just the PC thing to say instead of admitting that deep down inside I’m absolutely devastated once again. We have known for quite some time that Logan will have many challenges he will undertake in his lifetime but I have been secretly hoping and praying that maybe Landon would escape this nightmare without any serious complications that would plague him for the remainder of his life. That he might be spared of that burden and my heart may be just a little bit lighter and free of some of the immense guilt and grief that consume it. Alas, no such luck.

On the home front, things are still going well. Logan continues to be our monster eater – at only 5 weeks of age (adjusted age obviously) he’s already eating 7 ozs. every 4 hours or so!! He hasn’t been weighed lately because we haven’t been to the pediatrician in a few weeks but they both have an appt. next week and I’m extremely eager to find out how much he weighs. I will be shocked if he’s not atleast 9 pounds, he’s getting so heavy that my arms ache sometimes from holding him after only a few minutes! Landon is still struggling with his eating as he tires out very quickly and often can’t finish his 4 ozs. His sucking reflex is much weaker than Logan’s and it takes him much longer to take down a smaller volume of formula. Add that to the fact that he has reflux and often spits up and it leaves me constantly worrying that he’s not being properly nourished and not gaining weight at a healthy rate. Or maybe he’s doing well for a 5 week old and I’m simply comparing him to Logan who is eating much more than a typical baby his age would be??

Just to clarify the aforementioned “adjusted age” reference, due to the fact that the boys were born 15 weeks early, the question “how old are they?” will never be a simple one for us. Their chronological age is 20 weeks (born 10/5/08) but their adjusted age (using 1/19/09 due date) is only 5 weeks given that they weren’t even supposed to be born until that date. The latter age is what we will use for purposes of evaluating developmental progress and milestones.

They both sleep relatively well, although of course we will be much happier when they start to sleep through the night! Right now, they usually get a 10-11:00 bottle, one around 2 in the morning and another at 6. Often times though, one or both of them will decide to stay awake for one reason or another in between bottles and that is when the nights (and ensuing days) are rough. Bath time is extremely stressful as Logan absolutely hates it, as he does most things that involve any sort of handling. It scares me to take his oxygen off for a prolonged period of time, particularly when he is wailing so hard he is turning a shade of bright red and purple and is fighting to catch his breath. It makes it difficult to clean him as thoroughly as I’d like and with the attention he needs because I find myself rushing through it out of sheer terror and heartache. Landon, on the other hand, has no problem with his bath and usually just sits there and enjoys the warm water that Daddy makes sure to splash on his belly to keep him warm.
Well, it’s already 10:00 and the little men are due to eat soon so I have to run off. I’m hoping my next post will bring only good news though, as they don’t have quite as many doctor’s appointments in the next week or two. Please continue to pray for Landon and Logan and their well-being.

Happy Days!!

My heart has never felt stronger or happier than it has these past few weeks and I can’t imagine a feeling that could ever top it!! As I stated in my last post, our Logan finally came home to us on Friday, January 23rd, only 2 weeks and 2 days after his little brother, 25 days after his brain surgery, 24 days after his laser eye surgery and 111 days after his birth!!!! He was discharged completely free of oxygen except during his feeds only, since he has trouble keeping his sats up. While on oxygen, he is required to be on a pulse-ox monitor to monitor his sat levels and ensure he is not de-satting. He failed his car seat test (meaning he could not keep his sats up while sitting in his car seat for 1 hour) so we had to go buy a car bed for him and it’s hospital protocol if a baby goes home in a car bed he has to be discharged on an apnea monitor (as Landon did), although the doctors admitted he did not truly need one since he’s never really had problems with apnea or brady episodes. Unfortunately we noticed a week after he came home that his sats were drifting into the 70’s and staying there for an unexplained reason so we had to put him back on his nasal cannula around the clock, though it is a relatively low oxygen flow (1/4 liter). We are actively working on weaning him back off it but it appears for the next few weeks he will have to continue to suffer through it. On a brighter note, now that he is back on the oxygen he can tolerate his car seat and we no longer have to use that dreadful car bed. Logan is a much happier camper, as are we!

Well, it has certainly been a whirlwind over the last few weeks – sheer exhaustion courses through every inch of my body, my days and nights run into one another and have become indistinguishable, I’m barely finding time to eat between feeding both babies, washing bottles, doing laundry, cleaning the house, getting online to do a little work and then trying to catnap for a few minutes here and there. And I honestly couldn’t be more content. I guess it really comes down to this - I could never even begin to describe to anyone the retching feeling that welled up in my chest and stomach as we were forced to walk out of that hospital each night for the past 4 months leaving our boys alone in their cribs as we went home to sleep in an empty house. And as run-down, sick and weary as I’ve felt at times over the last 2 weeks since they’ve both been home, it doesn’t come close to the torment I experienced those lonely nights at home without our babies. So I am more than willing to sacrifice every night of restful sleep, every minute of relaxation and every second of silence if it means I can spend it holding and talking to them and providing them with a sense of security that must have been missing for so long when they were surrounded by the unfamiliar voices and loud beeps and alarms of the NICU.

We are obviously still adapting to our new situation and attempting to get them both on as much of a routine schedule as possible in order to preserve our sanity. Logan is our big eater and usually takes down 5-6 ozs. of formula every 4-5 hours while Landon has a much weaker sucking reflex and can only manage 3 ½-4 ozs. every 3-4 hours or so. They are both gaining weight at a healthy rate, with both of them coming in at 7 ½ pounds at their last pediatrician’s appointment a week ago!! They have certainly developed drastically different temperaments since coming home. Whereas Logan was always relaxed and easy-going in the NICU and Landon was extremely fussy and high maintenance, it now appears the roles have reversed. Many of the nurses in the NICU advised us that babies with neurological problems, such as Logan’s, are usually cranky and extremely irritable and this has become clearly evident in the past few weeks. He is such a gentle and sweet soul but especially sensitive at the same time - he often cries when being handled and is very easily over stimulated. Some nights he will grunt and cry and refuse to go to bed unless I pick him up, hold him and rock him to sleep. Of course I try to put him back down and he wakes up immediately and begins crying again! Needless to say, it leads to some extremely long nights (not that I mind, I just adore that he feels better when I hold him). In comparison to Logan, everything just seems so easy with Landon. He cries only when he’s hungry, sleeps great and is now completely free of all monitors and wires so he’s totally portable!! I just love being able to pick him up and carry him whenever and wherever I choose around the house. It astounds me how these little things mean so much to us that we probably would have taken for granted if not for our situation.

Since they’ve both been home we have spent a great deal of time at doctor’s appointments over at CHOP and it has admittedly been quite wearing for all of us at times, but in the same sense, we are extremely grateful they have access to such wonderful medical care. Logan requires follow-ups for ophthalmology, neurology, neurosurgery, urology/nephrology (for kidney calcifications), developmental progress, early intervention services along with weekly appointments at Pennsylvania Hosp. so the neonatologists can monitor his oxygen needs. His shunt has been working perfectly and we have been so blessed as to not have any problems with it thus far. I have been told many horror stories of babies who didn’t have a properly functioning shunt (and infection free) until 6 months or longer after the initial surgery and Logan’s was a success on the first try. Landon is receiving regular treatment for ophthalmology, audiology, urology/nephrology, developmental progress and early intervention services. At time of discharge his blood pressure was, and remains, extremely high so we are working with the chief nephrologist at CHOP to determine the cause and rectify (or atleast identify and stabilize) the problem. He also has severe reflux issues and has been started on medication to control it. As is obvious, we are dealing with a myriad of difficulties between the two of them and it can be extremely stressful keeping track of numerous appointments each week, making arrangements for babysitting for whichever one will be at home, getting them over to the hospital and through the appointment with as little discomfort and trauma as possible so as not to interfere with their daily routine.

When our boys were born they had maybe a 50% chance of survival. They had so many things going against them, first and foremost being that they were Caucasian, male, multiple gestation babies, who statistically do the worse in terms of mortality rates. And not only did they both survive, but they are thriving. What else can I say - these babies really do break all of the rules. And I’m not just referring to my miracle boys, but any premature baby. They may have been brought into the world early against their will but it was their will alone, and nothing else, that has kept them here to fight through another day.

LOGAN IS HOME!!

Yes, it's true - Logan finally came home to us on January 23rd and our nightmare ordeal in the NICU came to an end!! Thus the reason that I've been so lax in updating the blog and I do apologize but my spare moments have gone from limited to non-existent. I've been extremely ill for the past 4 days so I don't have the energy to write much now but just wanted to let everyone know the wonderful news. I will most certainly post a longer update this weekend with lots of pictures!!

My Due Date

Below 3 pics are Logan

It’s been quite some time since I posted an update but rest assured, it was for good reason. On Wednesday, January 7th, 95 long days after he made his early entrance into this world, our Landon finally came home with us!! It was, without a doubt, the most bittersweet moment I’ve experienced in my life. The feelings of pride, hope and absolute elation I felt as we were packing Landon’s things up in the hospital were simply incalculable. Our moments of sheer bliss have been extremely short lived in the past few months so we made sure we ate up every minute of it. However, as intense as those feelings were, they simply could not mask that all too familiar stabbing pain in my heart as we walked out of the NICU leaving our other sweet little boy lying alone in the crib he once shared with his brother. I have struggled every day since then with my feelings of guilt but find solace in the knowledge that Logan is stronger than anyone could have ever imagined and will be home in our arms in no time.

Life certainly has gotten much brighter for the Michalanko family in the past 2 weeks since Landon has been out of the hospital. I just can’t get enough of him – I find myself just sitting and staring at his perfect little face because I just can’t believe he’s really home. Unfortunately, due to the fact that he was still having occasional brady and apnea episodes, he was forced to go home on a monitor. This monitor has two main parts: a neoprene belt he wears around his chest with sensory wires attached to electrodes and a monitoring unit with an alarm. The sensors measure the baby's chest movement, breathing rate and heart rate while the monitor continuously records these rates. If his heart rate drops below 80 bpm, goes above 220 bpm or he “forgets” to breathe for more than 20 seconds, the alarm will sound. And let me clarify, this alarm is a series of excruciatingly ear piercing beeps that are absolutely paralyzing. It’s difficult to even think or concentrate when it’s going off in your ear and you’re trying to simultaneously turn it off while also looking at your baby to ensure his tone is good and he’s still breathing. However, while it is most definitely an inconvenience and a hassle (and particularly uncomfortable for Landon), I won’t deny that it also provides me with a blanket of repose and allows me to sleep easier knowing if anything goes wrong, our ears will hear about it immediately.

He really is such a good boy, waking up every 3-4 hours only to eat and then going right back to sleep (as I suppose most newborn babies do!). Although he barely uses his precious little voice, his cry remains the sweetest sound I have ever heard, even when it is waking me from an exhausted state of sleep at 3:00 am. He struggles with reflux and tends to spit up alot after his feeds so it’s important to keep him upright for a period of time after he’s done eating and we are working with his pediatrician to find a formula that he can tolerate. He continues to get breastmilk (and certainly prefers it) but unfortunately my supply isn’t great enough to sustain both him and his brother on it alone so we have to supplement with formula. At time of discharge, he weighed a beefy 5 lbs., 1 oz. and was 18.5 in. long…a far cry from the 1 lb. 10 ozs. and 13.5 in. he measured at birth 3+ months ago.

He had his first pediatrician’s appointment already as well as the 1st of many ophthalmology follow-ups at CHOP. He has Stage 1, Zone 2 ROP in his right eye and Stage 2, Zone 2 in his left eye, neither of which require the need for surgery as his brother’s did. He also underwent a standard hearing test twice prior to discharge and did not pass in his right ear on both exams so he will require an audiology follow up at CHOP as well. He will also need a urology follow up as a renal ultrasound done a few days prior to discharge showed some abnormalities. His blood pressures have been extremely high and the doctors are concerned he could be refluxing urine from his bladder back into the kidneys. He was therefore sent home on an antibiotic to prevent the development of a UTI due to this factor and he will need to be monitored to ensure it is not an indicator of a more serious problem. Both of the boys will likely spend a great deal of time in their infancy, and perhaps beyond, at CHOP for medical follow ups and developmental evaluations. They will also both need weekly therapy (physical, occupational, speech, etc.) for the foreseeable future and we have already contacted Early Intervention which is a statewide program that provides this therapy free of charge until the boys are 3 years of age, if they are both found to be eligible.

Logan’s struggles continue to plague him but as always, he will and does persevere. Unfortunately, he was all set to finally come home tomorrow, only 2 weeks after his little brother, but I received a call from the doctor a few moments ago informing us that his abdominal incision (from his shunt surgery) has become infected and they will have to take cultures and start him on a course of antiobiotics, which will keep him hospitalized for the next few days until they have it under control. Once again, I’m left heartbroken and at a loss for words. I just want my baby boy at home with us. It hurts so bad and the pain digs at me as I literally feel the hole in my heart continuing to grow. It’s a feeling that just shakes me right down to the core and I wouldn’t wish it on my worst enemy.

There have been many other new developments in the past few weeks so I will try to touch on some of them. First and foremost, the neurologist from CHOP visited him last Friday and unfortunately did not have good news to offer but instead diagnosed him with sustained clonus in his legs. This is a series of involuntary muscular spasms that occur in response to muscle and tendon stretch and is usually a good indicator of cerebral palsy, although it is of course too early to definitively diagnose him with such. Yet another corner to turn in the seemingly endless maze of difficulties within which we will have to navigate together for the rest of our lives. I guess you can never really prepare oneself for this sort of thing but Logan is just so inspirational and I’m utterly confident that he will lead the way for all of us.

We did manage to dodge a bullet last week as his 2 week post-surgery opthalmology follow up showed some apparent new damage to his left eye and we were advised he may need to undergo some additional laser surgery, which would be a terrible setback for him. Fortunately, his subsequent examination a few days later netted some much more optimistic news as the doctor concluded there was a great deal of improvement and he would not need the surgery after all. Finally, our little angel catches a break!! He will get his first of many follow up exams at CHOP next week to monitor his progress as he is still at high risk for other correctable problems, such as myopia or strabismus. He and his brother will continue to have at least annual retinal exams throughout adolescence and early adulthood as complications due to ROP may often appear later in life, although this is extremely rare.

Another bit of good news is that he was finally taken off the nasal cannula completely last week, which was a tremendous weight lifted off our shoulders because this was one of the factors keeping him hospitalized. He has been doing extremely well except during his feeds when he tends to de-sat into the low 80’s. He remains tachypneic with his baseline respiratory rate being in the 80’s but unfortunately this is not uncommon in babies with severe BPD and chronic lung disease and the hope is that as he grows and his lungs continue to heal, this will rectify itself.
He has been having a little trouble with his weight gain as it has been extremely erratic. Rather than a consistent pattern of growth, he tends to gain weight one night and then lose the next. We have recently discovered some blood in his stools and the docs are concerned he might have developed an allergy to the protein in my breastmilk so they had to remove him from it entirely and start him on a special formula. He has been on it for a few days and it appears to be working well; the blood has all but dissipated and he is finally gaining weight at a healthy rate. He is now up to 5 lbs. 14 oz - our little chunky monkey is almost 6 pounds, it seems so surreal to me.
On an extremely optimistic note (finally!), his VP shunt appears to be working perfectly and we have had no issues with it to date. His head circumference has stabilized and the once tense and firm fontanels are now soft to the touch, as they should be. The top of his head is now “sunken in” and while it is a disconcerting sight to see, it is an indicator that the CSF is finally being properly drained so all we can do now is hope his skull bones fuse together as they should in order to correct this abnormality. What a sweet relief it is to know he is now free of that immense pressure and headache with which he was likely burdened for the first few months of his life. We are certainly not out of the woods as an infection can occur at any time but the critical period has come and gone (the first 48 hours) so we can rest easy to an extent. He will have the shunt in his brain for the remainder of his life and will therefore need atleast 1-2 shunt revisions as he grows older and bigger. In the meantime, we will need to be diligent with daily measuring and monitoring of his head growth, ensuring his fontanels remain soft and pliable and watching for any signs of possible infection as any one of these events could be catastrophic for him.

Today, January 19th, 2009 was my due date for this pregnancy - the day our lives would change forever with the birth of our children. The day Steve & I would look back on as the best day of our lives. The day when life ceased to be lived for ourselves and we learned what it truly means to love another with every depth of your being. For quite some time after the boys were born, I felt we were robbed of this day. I felt cheated. What I should have realized, and what I'm only now beginning to understand, is that someone had a grander plan for us and our boys.
The journey we’ve endured over the past 4 months has been filled with incredible love, wonder, hope and tenderness and taught me lessons of patience, temperance, faith and driving devotion that I might otherwise have never experienced. Admittedly, there are days when I find myself wallowing in my own pity wondering "why me?" and more importantly "why them?" and it's then that I ask for someone to remind me why it is that God places these seemingly incomprehensible tasks before us. And fortunately for me, I have been blessed to have many people like that in my life, both family and friends and beyond. People that I would consider just passing acquaintances, people I haven’t spoken to or seen in years and even some people that I’ve never even met, have reached out to offer their thoughts and prayers and to say that it has been incredibly humbling would be a gross understatement. They have helped ease this heavy burden that has been placed upon my shoulders, and that of my babies. I look forward to the day I can share this experience with Landon and Logan and tell them all about the unconditional love and support we, and they, received to help carry us through this life altering ordeal.

Only Pictures Tonight....

Above: The boys reunited in the same crib again today

Left: Landon zonked out after a good feed

Landon sleeping in his little bouncy chair

Above: Landon catching some zzzz's

Logan loves snuggling with his primary nurse Lisa

Logan sucking away on his binky right before they wheeled him away for surgery

Above: Logan post-surgery

Below: Aunt Kate and Logan meeting each other for the first time

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.

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.

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.

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.