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.


Anonymous said...

I am so glad to see that your boys are both home with ya'll!! I know your heart was not complete until they BOTH were home! Praise the Lord!! I will continue to pray for your family!

Jessica said...

Intervention services should be used throughout the execution of a drug intervention or an alcoholism intervention.