As soon as we arrived at the NICU, we spoke with the neonatologist and nurse practitioner. They had consulted pediatric cardiology, urology, hematology and genetics to come see Layla. Layla was hooked up to monitor her heart rate and breathing - every baby in the NICU had to be monitored. She also had an IV of a small amount of sugar water. Other than that, she was simply there for testing to see why her platelets were so low and to check on the issues that were noticed while she was in utero. We were able to meet Dr. Harmon, the pediatric urologist, the next day. We knew we would be seeing him at some point after she was born so it was nice to get to talk to him so quickly. He confirmed that Layla had a duplicate collecting system (2 ureters) for her left kidney which was causing the hydronephrosis. There are two surgery options that he explained to us and we will see him in January to determine what he will do. He said it was an easy procedure and she would be just fine! We really liked him and have heard wonderful feedback from other parent's whose children have seen him. She had a test done that showed she had grade 5 reflux on that kidney. Layla will be on anitbiotics daily until surgery to prevent an infection. The next day we saw the pediatric cardiologist. He used lots of big medical words but basically, Layla's heart is fine too! She had a PDA and PFO at birth which are both pretty common in early babies. The PDA was closed by the time we met him. We will see him again in April to make sure the PFO has also closed. (Side note - no doctor has heard a murmur since then so hopefully it's already closed up!) Layla had 3 echocardiograms within the first two days of her life. We actually saw a pediatric cardiologist from Oschners before we left Wesley's NICU. He is the one that saw the PDA and PFO. He also mentioned that her heart was more midline in the chest than where it should be. This backed up what the sonographers were seeing while she was in utero. The UMC cardiologist didn't have an issue with the positioning. We will double check with him on everything when she has her echocardiogram in April. Layla's platelet count was up to 285,000 after her blood transfusion in Hattiesburg. Each morning, she had a CBC (complete blood count) to check her platelets and each day they were going down again. The neonatologists (both at Wesley and UMC) thought Layla was experiencing
neonatal alloimmune thrombocytopenia. The needed a sample of my blood to a lab in Los Angeles to confirm. I had to check in as an outpatient that Monday and get lab work done. Each day was pretty much the same - she was just there getting her blood drawn every morning and that is it. That Wednesday, the neonatologist infomed me that I did not have negative antigens meaning it was not NAT causing L's low platelet count. He didn't know what was going on then! They had already ruled out bacterial, viral or fungal infection. The hematologist came by during that time, and she also didn't have an idea what could be causing it. She said every test she would have ordered had already been done. The next day, a new neonatologist came on. He introduced himself and told me that Layla was too healthy to be in the ICU. He said if she could get her platelets to stablize, he felt comfortable discharging her and letting us see hematology as an outpatient. That was a Thursday and Layla's platelet count was still trending down. Each morning when we woke up, one of us would call the NICU to get her count before heading up there. Each morning I cried when I heard the news. By Saturday, the count was down to 35,000 again. Guess what happened Sunday though? Her platelet count went up to 44,000 and on Monday up to 50,000. Robert had to go back to work on Tuesday so we had to drive back to Hattiesburg. I got up the next morning and drove back. I walked in to the neonatologist telling me we could go home! Her count was up to 55,000 - still very low (normal is above 150) but he felt comfortable with us going home. After 12 days there, we could finally go home! Layla had to pass a car seat test and we could hit the road. We still didn't have a reason for the thrombocytopenia, but neither one of us cared. What an amazing day!
Her first day. They put a bow on her (for mom's sake) to cover where they had taken blood from a vein in her head.
Me telling the lady in the lab that I pass out.
She loves her hands in the air!
We were able to change all her diapers, feed her and check her temperature when we were there. She did not like how long it took that themometer.
Hour and a half long car seat test.
Changing into her going home outfit. She should have been way happier!
First nap at home.
The NICU at UMC is amazing. I cannot say enough good things about the people there. They allow parents to visit as often and stay as long as desired and call anytime. The doctors included Robert on rounds since they knew he was in the medical field. Also, the doctors are around all day - you can just walk up and talk to them. All the nurses were more than wonderful. They were so sweet and loved Layla. They have a staff social worker who gave us lots of good advice. If a baby was healthy, the parents were allowed to do everything. Nursing was so important to me that we tried to be there for every feeding during the day. At night, I would pump every 4 hours (I set an alarm throughout the night) and bring the mik to the hospital the next day. They used my milk for her night feedings. My heart still hurts for all the babies still there. Layla was so healthy compared to the other 99. That's right, there are 100 beds of sick babies. Please pray for all of them and pray for the amazing medical staff that are helping those sweet babies grow and heal.
We are so thankful for all of our friends and family that were there for us during that time. Layla had so many prayers going up for her. I mean SO many. So many people visited and sent gift baskets, gift cards and money for food, gas and hotels. Robert's fraternity brother even let us stay in his lake house for the last several days. People were so giving. We are beyond grateful for the love we received. There is no way we can send enough thanks. We truly appreciate each and every one of you. Robert and I celebrated our 4th wedding anniversary while we were there. Well, he was in Hattiesburg working and I was in Jackson with his mom. It was tough but I look forward to that 5 year celebration. Our marriage is so incredibly strong and we will have a healthy one year 8 day old little girl to celebrate with us.
