Sunday, November 30, 2008

8 Weeks Old and 3 Pounds!

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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.

BELOW IS A VIDEO OF THE BOYS MEETING ONE ANOTHER AGAIN FOR THE FIRST TIME SINCE THEIR BIRTH!!

video

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.

Wednesday, November 12, 2008

Landon Comes Off the Ventilator!


First two pics are Landon on CPAP!!





Pic to the right is Landon lying awake prior to being moved to CPAP










Below pic is Logan sucking on his little pacifier that he loves so much



Right pic is Logan, awake as usual

WOW, what a special day it was yesterday - I got a big surprise when I arrived at the hospital and saw my big boy Landon off the ventilator and on the CPAP (Continuous Positive Airway Pressure)!! Whereas the ventilator was providing breaths of oxygen directly into his lungs through the ET tube at a certain rate and pressure (essentially breathing for him), the CPAP delivers pressurized air to his lungs by using small prongs in his nose. Landon is now taking every breath on his own but the steady flow of oxygen coming into his lungs is helping to keep the air sacs in his lungs open so they don't collapse after each breath. His blood gas this morning was great and, although he's had a few episodes of bradycardia (heart rate drops) and is still de-satting, the doctors are pleased with how he's doing. I'm praying with every inch of my being that he will continue to do well and won't have to be put back on the ventilator.

Unfortunately, yesterday's excitement was short-lived with the news that Logan's head measurement had jumped 1.5 cm. overnight, which is extremely alarming. They proceeded with yet another lumbar puncture (spinal tap) to alleviate the pressure on his brain and were able to retrieve 4 cc's of fluid. In my discussion with the doctor, she informed me that it's highly unlikely that the hydrocephalus will resolve on its own at this juncture and she is almost 100% certain that he will eventually need a VP shunt surgically placed within his brain . However, the neurosurgeon will not attempt surgery on him now because he is too young, small and weak. Therefore, in the interim we can only hope that they can continue to draw fluid from his brain using the taps for another few weeks or months until he is big and strong enough to be able to survive the risky surgery.

In terms of Logan's breathing efforts, he is still on the ventilator and doesn't seem to be making much progress so the doctors have decided to put him on a new, more advanced ventilator that they just received from CHOP. It is the only one that the hospital has and out of all the babies in the NICU, they decided that Logan could benefit the most from it.

Finally, some good news with which to end this post: Logan is now up to 2 lbs., 1 oz.!!!! :) My little stringbean is finally starting to beef up, what a tremendous relief. His little brother Landon is now 2 lbs., 5 ozs, he's growing like a weed and shows no signs of slowing down. They are both about 14.5 inches long, so Logan gained back that inch that he was behind his brother at birth.

Unfortunately, I am going back to work next Monday so that I'm able to take time off when the boys come home from the hospital (hopefully in January). Steve and I are heartbroken that they will no longer have either of us with them during the days but luckily I work right in Center City so I'm only a cab ride away from the hospital and will still be able to spend my lunchtime with them. My whole life has been on hold since August when I was put on bedrest and I'm not sure how well I'm going to adapt to this transition back into the real world. It absolutely blows me away how wrapped up my entire world has become in our two little boys.

Sunday, November 9, 2008

5 Weeks and Counting






Our little boys are 5 weeks old today and 30 weeks gestational age (if they were still in my belly where they belong). It's so strange that these past few weeks have felt like the longest weeks of my life but they really did go by rather quickly now that I'm looking back at them. The last few days have been much the same as the first few weeks...a few ups and lots of downs.

Logan's head circumference measurement jumped up another centimeter and upon examination of his head and fontanelles by the doctor, they determined that the cerebrospinal fluid had again built up to a dangerous level. Unfortunately, he therefore underwent his 2nd spinal tap on Friday during which they were able to extract 3 cc's of fluid. Although these spinal taps are painful and stressful for Logan, they truly are a blessing in disguise and we are lucky to have them as a temporary course of action. I didn't mention this in my last post, but Logan has communicating hydrocephalus, which basically means that there is nothing blocking the flow of CSF from one ventricle to another or from the ventricles into the spinal areas. Instead, this is a problem with absorbtion of CSF. Either the ventricles are producing a greater than normal amount of CSF and it is overwhelming the system, or the parts of the system that are supposed to be absorbing the CSF are not doing their job. If the CSF wasn't flowing down into the spinal areas, then a tap would not be a viable option to drain the fluid and relieve the pressure on the brain. A small silver lining to an otherwise dreary situation, but we'll take whatever we can get these days.

They are off the parenteral nutrition (IV fluids containing vitamins, minerals, salts and lipids) and receiving only breastmilk fortified with extra calories in their gavage feeds. They are taking 15 ml's every 3 hours and are continuing to slowly grow and gain weight. As of Friday, Landon is up to 2 lbs., 2 ozs. and Logan is weighing in at 1 lb., 14 ozs. but they will both be weighed again tomorrow and I'm hoping Logan can top off the 2 lb. mark, what a great accomplishment for him.

In regards to their breathing efforts, unfortunately they are still on the ventilator and don't seem to be making too much leeway towards getting off it, which has been so disheartening. Logan had a particularly bad week and has been bumped up much higher on his vent settings and oxygen due to poor blood gases. On Friday, in addition to the spinal tap, he received a chest xray and a bronchoscopy. The chest xray showed a partial collapse of the right lung so the bronchoscopy was done to check for signs of scarring, inflammation or other blockage within the lungs. Thankfully, his lungs were clear (except for some fluid) but they are still uncertain as to exactly what is causing this setback. They both tested positive to a strain of staph in their ET tubes (very common) and were started on a course of antibiotics that will last anywhere from 7-10 days. If the infection wis playing a factor in their breathing problems, hopefully things will improve once the antibiotics get a chance to kick in. As with all things NICU-related, only time will tell.

I have been continuing my kangaroo care with both Landon and Logan and cherishing every part of it - the feel of their skin against mine, the sweet smell of their tiny bodies, the way they look up at me when I speak softly to them. There really isn't anything better in the whole world. I only hope my babies enjoy it as much as their mommy does.

Tuesday, November 4, 2008

And the roller coaster continues...

Yesterday was a rough day. The cerebrospinal fluid building up in Logan's head as a result of his bleed is increasing and causing his ventricles to enlarge. The doctors decided to perform a spinal tap to drain some of the fluid (2 cc's) but this is only a temporary respite and he will probably need many more of them in the next few weeks. Unfortunately if he continues down this path, he will need surgery to insert a VP shunt into his brain, which is, according to the doctors, their last course of action if all else fails. Of course our little fighter tolerated the procedure quite well, came out of sedation an hour or so later and spent the remainder of the day active, alert and as feisty as ever! Landon spent most of the day struggling with his breathing and was requiring as high as 70% oxygen because he was continuously de-satting, sometimes as low as the 30's. His blood gases were bad and therefore his vent settings were pushed up a bit; certainly not the direction we need him to be moving. Needless to say, last night was a dark one for me.

Today, however, brought a new day and my boys bounced back with resounding vigor. Both of them did great with their breathing, blood gases were good and their vent settings were weaned a bit. They continue to tolerate their feeds well and Logan made it to Day 10 today so he was rewarded by getting his PICC line removed! A PICC line is a centrally located intravenous catheter used to adminster IV nutrients and fluids. It is typically more stable and can remain in place for much longer than a regular IV. He will no longer receive his nutrition intravenously and will now rely solely on my breastmilk (though gavage feeds) for his growth. It's so nice to see one less IV attached to his tiny arm and one less wire leading from his body. He is up to 11 cc's every 3 hours and Landon is not too far behind at 10 cc's. He will probably have his PICC line removed as well in 2 days if he continues to tolerate his feeds as well as his big brother has.

On a sidenote, Logan apparently had enough of his trach tube today and decided to go ahead and extubate himself! He actually pulled the tube right out of his throat all on his own! He is such a little pistol, he makes me so proud!! The doctor said she was impressed with how well he did for the few minutes that his tube out and they didn't have to resuscitate him as they do with alot of babies that do this. Once again, our Logan is proving everyone wrong.

Sunday, November 2, 2008

1 Month Old Already!!



I can't believe our boys are already 4 weeks old, what a beautiful day!! And what a great birthday present for Logan as Daddy got to hold him today for the first time. Logan really loves his Daddy and did very well when he was holding him. He very rarely desated and the few times that he did, Daddy would talk to him and it seemed just the sound of his voice would cause his sats to shoot back up to the
90's where they belong. It really was a special day for the both of them.

Landon's nurse insisted I try again today to kangaroo with him and although I was extremely nervous because I didn't want to upset him again, I absolutely ache to hold him so of course I agreed. I'm so glad I did, because he tolerated it much better and I was able to sit with him for 3 hours! What a tremendously healing effect my sons have on me as I feel so much stronger tonight whereas last night I was completely lost. How surprisingly curious that they are the ones guiding ME through these awful days. I don't think words will ever define how deeply in love I am with these boys.

As far as how they are doing otherwise, they have been relatively stable for the past few days. Landon is now up to 2 pounds, what a big boy he is!! It's so reassuring to see him filling out and putting some meat on those delicate little bones. Logan wasn't weighed this weekend but we're hoping by tomorrow maybe he'll be up to 1 lb. 10 ozs. They are tolerating their gavage feeds well with Logan receiving 7.2 ml's and Landon 5.8 ml's of breastmilk every 3 hours. As for their breathing, they are both still on the ventilator and both received a dose of Lasix yesterday, which is a diuretic used to clear fluid build up in their lungs. It seems to have really helped with their breathing as Logan was back down to 25-30% oxygen and Landon was at 35-40% (room air that we breathe is 21%). Every day they spend on the ventilator is causing more damage to their already extremely fragile lungs and I eagerly await the day they can finally graduate to the CPAP. Finally, all of Logan's blood cultures came back negative, neaning he does not have an infection as the doctors suspected, and all of his antibiotics were therefore ceased. What an incredible relief!

The next hurdle is Logan's weekly head ultrasound that will be performed tomorrow. We typically receive the results on Tuesday morning so that is where all of my energy (and prayers) will be focused for the next two days.

Saturday, November 1, 2008

Needing Some Inspiration

Today was a rough day. I tried to kangaroo with Landon for only the 2nd time since his birth and, as I feared, he didn't tolerate it at all so I asked the nurse to put him back in his isolette. A mother's touch is supposed to soothe her child and ease his pain but mine serves only to upset and irritate my son. I'm so heartbroken.

Below is a prayer that I found online. I read it often when I'm feeling weak.

A PREMATURE BABY'S PRAYER

God bless the little child behind the plastic wall
For all he knows is the ringing of the bells and
the blurred images around him. He has been taken
from my womb without warning and I long to hold him
in my arms.

Lord, I ask in your name that my child be healed.
I am willing to accept your decision no matter what
it will be. I am willing to take on the responsibilities
for caring for this child. I am willing to give this
child love and understanding no matter the cost.

Please Lord help me to accept reality and what has
happened without explanation or warning. Help me
face the fact that this is not my fault and that
I was given a special task to complete here on Earth.

God give my child the strength to make it through another
second, minute, hour and day as each moment is
a blessing and a triumph from heaven.

God, may you give the strength and compassion
to the caregivers and nurses that take care of my child
May you keep my child protected and free from all injury
and pain.

Please take away the guilt and burden from my heart dear
Lord. It is heavy and I feel it is all my fault.
Take it away dear Lord. Sweet Jesus allow me the strength
and understanding I need to communicate with the Doctors
and Nurses.

As you see dear Lord, I am at your mercy for the life of
my child. Please leave him here on Earth and know that
I will provide all the love and understanding that
this child needs. I accept the challenge and will be
your humble servant dear Lord.