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.
