Tuesday, February 24, 2009

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.

Tuesday, February 10, 2009

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.

Wednesday, February 4, 2009


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!!