Wolfson's NICU is a level 4 NICU...where this tiniest and and sickest of babies go when they are born too early or with complications. They have 60 beds and two different levels, depending on how acute each baby is.
This was not my first NICU experience, as my nephew spent 3 weeks there 4 years ago when he was born at 32 weeks. I also spent a rotation in physical therapy school "treating" little sub 1 pounders and 1 pounders...mostly casting and positioning. But it is totally different when it's your own flesh and blood laying there in that incubator hooked up on monitors. It's so easy to be positive to others that are going through that experience "they just need more time"..."they will be okay"..."they are in the best possible place they could be" etc. etc. It is VERY hard to believe that when it's your child laying there while the neonatologists run every possible test LOOKING to find something wrong. I mean that's what you want, you want them to be thorough but everyday it is like something new and HUGE could be wrong with your child. Waiting for blood work, xray's, echo's, and cultures to come back and for the doctor to finally make their rounds so they can tell you what on earth is going on, is like torture when all you want to do is open that incubator and hold your precious little one. You worry that your baby won't know you who are, that they will think the nurses are their mommy, and that you are missing out on the crucial bonding time of those first few days while your sweet baby lays there with no human touch other than an occasional diaper change. It breaks your heart.
Every time we would arrive to the NICU to see Madison and spend our 3 minutes scrubbing in with surgical soap, I would spend those 3 minutes just praying that when I walked over to her corner that I would see a monitor with perfect numbers on it....HR 130, SpaO2 100, Respiratory rate 60, temperate 36.5C. The first 4 days of her life that NEVER happened. We were lucky to get one of those numbers for a brief moment but never at the same time. I remember telling myself "she just needs time she will be fine, God is taking care of her" but it is so hard to believe when you see them making no progress...or worse moving backwards! I wrote down everything the doctors and nurses told me about her progress or her goals so that I would know specifically what to pray for and I am so glad that I did because it was so neat to get an update...pray about that specific thing...get our prayer warriors on it and then find out the very next time we checked in that our prayers were answered! We had some pretty neat experiences of instant answered prayers that I want to share and document so that I can always remember how God took care of her that week specifically when mommy couldn't, and how ultimately now matter what the doctors tell you...GOD is the greatest physician and can do and heal anything.
Madison was born! She was so beautiful, just how I had imagined. She came out quickly...too quickly so they spent a lot of time clearing her lungs trying to get her to breathe. She looked blue...they thought maybe bruised from the fast delivery...or maybe not getting enough oxygen. She didn't cry for a good 3 minutes which had me very worried. Finally a tiny sweet little cry came out and they handed her to me to nurse. They still weren't sure about her color or breathing so they watched her closely while she nursed and decided to call NICU for a consult. She went up to the newborn nursery (where healthy babies go) and by the time she got up there...there was no question she was cyanotic...blue as can be. They rushed her to the NICU where she remained for the next week.
Right off the bat they started blood work to rule out infection...standard for every baby in the NICU. For the first 72 hours she was on antibiotics, prophylactically as they watched her cultures for "growth". She was placed on oxygen support through a nasal cannula (I knew this was the lowest level of support for breathing issues so that made me feel better about her "status"). They monitored her blood pressure, temperature, blood oxygen levels, respiratory rate, and EKG (heart rate and electrical activity). She had an IV and an arterial line so they could draw blood gases every few hours which is a snapshot in time of what her breathing looks like...as far as what her blood carries to the tissues.
"Normal" for each of these was:
Blood pressure should be appropriate to her gestational age and weight...so for her, her mean arterial pressure needed to be about 36 or 37 since she was born at 36w6d, Madison never had a problem with blood pressure.
Temperature should be 36.5C axillary. Madison had issues with temperature control right off the bat so we couldn't hold her until her temperatures leveled out...which was really hard.
Oxygen saturation should be 85-100. Madison had major issues with desaturation meaning she dropped lower than 85 all the time multiple times a day. She would get down into the 70's quite often which is scary. This is what caused them to put her on oxygen support. When she would have desats they would increase her oxygen until she could stay between 85-100.
Respiratory rate should be below 60 but not over 100. Babies sometimes increase respiratory rate when they are in REM sleep so the monitors allow them to go up to 100 but anything over 60 is "tachypnic". Madison spent the first 4 days at 120+ respirations per minute, which wore her out so she wasn't allowed to start feedings (even by feeding tube) until this got a little lower.
EKG (HR) needed to be between 80-200 bpm. Madison never had an issue with heart rate unless she got really worked up, like during an arterial or IV placement.
Arterial blood gases should be between 80-100mmHG but def. not below 60. Madison was usually in the 30's which is NOT good. This is another reason for the oxygen support.
Madison was started on 2 liters of oxygen at 35% (room air is 21%). Within 10 hours of her birth this was bumped up to 3 liters and 100%...NOT good.
They did a chest xray and it revealed and "enlarged heart" which can mean a number of things but most likely some sort of cardiac malfunction or disease. They also said that the pattern she was having the first 24 hours appeared to be more "cardiac" than respiratory related. They ordered an echo and specific prayers began for her to have a clear echo and no cardiac issue. Within 3 hours her breathing improved and she was turned down to 50% oxygen and falling (10%) at a time per hour until she leveled back out at 35%.
We arrived to the NICU to see her for the first time and we found her like this...totally broke my heart...I just wanted to grab her and hold her
Doing a little better with a paci
The echo was due this morning but results would take a few hours to receive. We arrived at the her bedside to find that she was on a new nasal cannula "high flow" and she was back up to 100% oxygen and now 6 liters...not good at all. Her breathing was much better at this level but being on 100% oxygen is not good especially for a newborn it can cause all kinds of future complications. At this point I was getting pretty worried and began praying specifically for her oxygen to be turned down immediately and her echo to come back normal.
At 2:00pm the doctor made his rounds and said the echo looked perfectly normal but that it did reveal a PDA (hole in heart that "should" close within first few days of life). He said it was normal for it to be open for up to 2 weeks and since she didn't have a murmur he felt like he could cross "cardiac" off the list of possibilities.....ANSWERED PRAYER!
He also told us that he switched her to high flow cannula because he thought Madison's issue was obstructive apnea, or as he termed it "floppy airways" that preterm babies sometimes have. He said that the high flow forces air down the airways helping to open them and that having her lay on her stomach also helps open the airways and once this was done her numbers immediately improved, which was a good sign. The plan was to watch her for 24 hours on her stomach and on the high flow and if she showed improvement and no desats then he felt like he could say it's obstructive apnea...vs. Central apnea which is much worse and much more scary. If there was no improvement than they would have to start neuro scans to determine if its central apnea (which is what happens commonly with SIDS...so NOT good).
We immediately began praying that it was just "floppy airways" and that her numbers would look good for the next 24 hours. The next 24 hours she did great and had no desats through the night, for the first time since arriving, and they were able to slowly lower her oxygen from 100% down to 35% but still at 6 liters....ANSWERED PRAYER!
Feeding day begins! They decided to start giving her 8ml's of milk in her feeding tube to see how she could handle it. I had been pumping since she was born so they had more than enough milk to give her. She also got her first bath (by me and the nurse) and I got to change my first diaper. Up to this point the only nutrition she had received was glucose in her IV. So she still had not pooped and was losing weight...therefore her bilirubin was getting higher and higher (Jaundice). The nurse also said that I could hold her during her feeding tube feed which was very exciting! I got to hold her for 2 whole hours! For the first time since being in NICU all of her numbers looked perfect on the monitor. It was such an emotional experience to not only get to hold my baby girl but to see that all of her levels normalized when she was in my arms. I would talk and sing to her and she would turn towards me and her breathing would slow down immediately as if she knew who I was....best feeling in the world and ANSWERED PRAYER!
First bath with mommy
First time I held her in NICU
First time daddy held her
Then nurse said if her breathing looked good at her 5pm feed that we could try a bottle (much more work on Madison's part so they wouldn't attempt it unless she was breathing well). 5pm came around and her breathing was too labored for a bottle so she was tube fed again. The next feeding at 8pm I went back down to see her and was told they decided to check her digestion and if she did good they would up her feed (she had take more than 35ml by bottle for all 8 feeds for 24 hours with no desats to go home). They drew up her stomach contents to see her digestion progress and they got 14mls....ummm she only ate 8mls so it seemed as though she was somehow "making" food. Not good. If she repeats this they would have to xray her stomach. UGH! It's always 1 step forward and 2 steps back! Prayers for her tummy went up and the next feeing she only had 2ml residuals (from her 8ml feed) so they called off the xray since she was moving in the right direction! ANSWERED PRAYER!
Madison did better through the night with her feeds and by morning was up to 16ml per feed with no residuals! She also began pooping which is always a good thing as far as bilirubin goes. I sat by her bedside all day, normally I would go back to the room for a quick nap and then return but this was my last day in the hospital and it was very hard to imagine going home and leaving my baby behind...not natural AT ALL. We live 45 min from the hospital so once I go home...I am home...no going back and forth as I could in my room just down the hall. Madison had a pretty good day on day 4 which I really needed to see so I could feel better about going home. She had reached the 72 hour mark with no "growths" on her cultures (meaning no infection) and she was taking less oxygen than before and hadn't had any big desats in a while. She was still quite tachypnic though and wasn't fulltime bottle feeding yet so they couldn't predict a timeframe in which she would be released. She was also getting even more jaundiced because she still wasn't taking full feeds. Overall though we felt like she was moving in the right direction. She took her first bottle on this day and did really well with it...no desats and was maintaining her temperature enough that we could take her out to hold her whenever we wanted as long as she was covered well. I was there for every feeding that day, some by bottle and some by feeding tube and I held her most of the day. Towards the end of the day her numbers weren't looking so good, when I held her, and she had to go back in the incubator, which had me worried...she seemed to suddenly be moving backwards on the breathing front again.
Around 3pm I went back to my room to pack up my stuff because I was discharging at 6pm and I wanted to be back in time to do her 5pm feed. I went back to the NICU around 4pm and my nurse immediately rushed over and said is your husband here too? I told her he was at home (45 min away) but that he planned to be here at 5pm. She said "well we did an xray on her lungs and the doctor needs to talk to you both about the results and he is here now. He told me to tell him when you got here."
*****okay this did not sound good...trying not to panic*****
I called Jordan and told him to come up to the hospital now, and that the doctor had some news about Madison's xray and it didn't sound good. I began pressuring the nurse to just tell me what it was. She nonchalantly said something about air outside Madison's lung and a hole in her lung. I said "she has a pneumothorax!!!!??" The nurse was like "oh you know what that is?" I immediately started getting emotional and she went and got the doctor. The doc came over with her pen and paper and began drawing me a diagram of the lungs and how a pneumothorax happens and what "can" happen...I didn't want to say that I already knew all of this because I wanted to hear EVERYTHING she had to say about it and for her to tell me that my precious baby girl would be just fine. This is not what I heard... I heard (lung collapsing, chest tube, distress etc etc.) and then she said "but don't worry it's pretty common we get about 7 cases a year here in our NICU."
WHAT??? That's common? 7 cases a year in a 60 bed level 4 NICU?? Not exactly what I would describe as common!
She said it was "spontaneous" and came on out of no where....in other words not from trauma (like you see on TV). She also said most cases resolve on their own within 24-48 hours and that she would personally sit by Madison's bedside through the night in case her lung collapsed or she went into distress and she needed to be tubed.
Shortly after she finished our talk and walked away Jordan arrived. I had already texted him the "gist" of what was going on because the suspense was killing him. He assumed that she was already in distress and they were standing by her bedside waiting to tube her any minute. So he was surprised to see her looking normal in her incubator when he arrived. The nurse came over and reiterated everything the Doctor had told us so Jordan could hear it first hand and ask questions. We immediately spent the next hour in prayer over her as did all of our friends and family. We both sat there watching her monitors almost waiting for her numbers to drop and for them to run over in a panic. It was suddenly so scary and NOT the night I wanted to leave my baby behind and be 45 minutes away! We began talking about staying in the NICU all night...rotating sleeping, possibly getting a hotel room across the street so that if/when they called us to tell us "it" happened we could get there quickly. I was super emotional at this point and feeling so helpless. My baby girl was sicker than we thought even though it seemed she had been improving.
6pm was quickly approaching and everything inside of me DID NOT WANT TO LEAVE. I looked over to see Jordan deep in prayer and I joined in and just asked God to take care of our precious baby girl and to give us a sense of peace. I finished and looked up at Jordan and he had a huge smile on his face as he looked at the monitors. I looked up and saw perfect numbers for the first time since day 3 when I held her. Jordan said "she's gonna be okay Ash". I said how do you know? He said "I just asked God for a clear sign that Madison would be okay and when I finished I looked up at the monitor and for the first time saw 100% sats, RR 60...perfect numbers. That is our sign. He's going to take care of her."
So we left with that sense of peace I had prayed for and went home to be with Hunter, who I hadn't really seen much of that week.
Jordan and I both slept that night pretty well considering the circumstances...ANSWERED PRAYER. I called the NICU every time I got up to pump that night to check on Madison and they said her numbers were perfect all night long! The longest running time she had held perfect numbers since admission. They lowered her to 23% oxygen. She was maintaining her temp so they could start swaddling her and they would repeat the xray in the morning to see if it had shrunk.
The day continued to get better as the xray showed a decrease in size of the pneumothorax. Her monitors showed her breathing was close to perfect (perfect on sats but still slightly tachypnic). She was also taking all bottles at every feed and was up to 16ml per feed and I was able to nurse again so long as we weighed her before and after each feed. ANSWERED PRAYERS! At her 5pm feed they took her OFF oxygen! The doctor came by for rounds and for the first time gave us a prediction of going home "early next week" as long as she continued to improve and her xray came back clear the next morning...woohoo! Her feeds gradually increased up to 50ml per feed on this day and she was not looking like a baby who had a pneumothorax! They decided to start treating her for jaundice under the bili lights...since she was there anyway even though her levels weren't dangerously high. Day 5 was a great day and it was the first time she seemed to have turned her corner!
Our little tanning bed baby
I arrived to the NICU just in time for rounds. A new doctor, the weekend doc, came by this time and saw Madison laying there on no oxygen, taking full feeds, a clear xray from that morning and perfect numbers on the monitor and he said...."why is she here?" jokingly of course. He said, "hey mom what do you think about taking your baby girl home tomorrow....on Mother's day!?" umm.....best mother's day gift possible! He told me to bring her carseat in for the carseat test and if she passed that and her bili numbers have gone down by the next morning then she could go home! ANSWERED PRAYER!
I immediately went down and got the carseat so she could do her test....which consisted of sitting in the carseat for an hour and half with no "breathing episodes". She passed the test and now only 1 thing was left to accomplish before she could come home. But we wouldn't know until 10am the next morning.
I called promptly at 10am to get the results of her bili levels and they weren't in yet. The nurse called me back 20 min later and said she could go home today, Mother's Day, at 4pm!! Jordan and I couldn't wait to get up there and get her and bring her home! It was such a great feeling to finally bring her home and when we walked in Hunter immediately saw her and said "oh there you are"! For the first time that week we felt complete with all of our lovies under one roof.
It has been such an eventful ride...one that cannot compare to some of the other "stories" going on in that very same NICU but as I said before when it's your own flesh and blood in there it doesn't really matter how early they were born, how much they weigh, or what the "issue" is, it's scary and it's a crazy emotional ride. Jordan and I definitely counted our blessings everyday that we made the walk past each baby from the front on of the NICU to the back corner, corner 208, where Madison stayed. There were many sick babies in there that had much longer stays than Madison and a much worse prognosis. We hope to never experience that again but we thank our GOD for taking such good care of our baby girl when we couldn't and we know that HE continues to do so everyday of her life.
Such an ANSWERED PRAYER!
Best attempt at a family photo on Mother's day