There is so much I want to share with you, but for the past few weeks my life has revolved around sterilizing, breast pumping, cleaning shit and drying tears. So, it’s been hard to collect all my thoughts and feelings about my experience as a new mom. Every time I sit down to write this entry I’m reminded of all the horrible things I have felt and dealt with and it’s not easy to talk about. And then, of course, baby Ant starts crying. I type a few sentences and am called away. I love being a mom, but it makes writing hard. Here is my attempt at telling Ant’s story so far…
This is me at 9 months! I gained 60lbs!
Pregnancy. When I found out that I had cholestasis of pregnancy and that I needed to be induced at 37 weeks I was scared. But, that fear was based on the potential of my condition harming my little Ant in-utero. I never thought that my baby would be born with premature lung disease. I never thought that I would go home with out him. When I read all the parenting and pregnancy books, I always skipped over the parts about premature babies. My Ant would never be in the NICU, I told myself. I did every thing right- I never smoked, never drank alcohol, ate almost completely organic, exercised, ate plenty of calcium-rich foods. None of it mattered. My caution during pregnancy didn’t prevent my poor son from having problem after problem after problem. Even now that we are finally home his doctors are still finding issues with his health. He has had to see three different specialists in the first month of his life. More than anything I want Ant to be healthy. Like any mother, I would give anything to make him better. If there was anything I could have done differently in the 9 months prior to his birth, I would have done it without question. But, there is no explanation for his illnesses. At least, not yet. All I know is that he seems happy and healthy, and that is what’s important.
My sweet Ant with his oxygen tube, ventilator, feeding tube and IV.
Labor and delivery. On Wednesday, September 24th I began induction at 10 PM. Around 1 AM I began having contractions, but I didn’t feel anything until after my doctor broke my water at 8 AM. Around 10 AM I asked for my epidural. The anesthesiologist had to do an ultrasound of my spine, because I have scoliosis, to make sure he put the catheter in the correct vertebrate. People told me the epidural wouldn’t hurt. It did. At 11 AM I was 4 centimeters dilated. My boy friend asked the nurse if he had time to leave and get his mom from the airport. The nurse said it would be fine, that usually with inductions the cervix dilates only 1 centimeter per hour. By 11:45 AM Anthony returned with his mother. I was 10 centimeters dilated. The nurse told me it was time to start pushing and I cried. I’m not sure why… I think it was a combination of fear, anxiety and joy. I pushed about 30 times before my doctor arrived and then I pushed 6 times with her. By 1:23 PM on September 25th Ant was laying on my chest and screaming. By 1:24 PM he was blue and unable to breathe. My doctor pressed the emergency button and my son was rushed to the NICU. As my doctor stitched me up (I had a third degree tear) I sobbed. I don’t know if my boyfriend was crying. I was unaware of everything. I think My boyfriend’s mom left the room.
Ant on the day before his discharge, all un-hooked (except for the monitors under his clothes).
Diagnosis. It could have been hours or seconds, I really have no idea. But some time after my doctor finished stitching me up, the NICU doctor and her team came in to talk to us. She began by saying that Ant was unable to breathe on his own and that he was put on a high flow oxygen canula and a ventilator. I don’t know what she said after that because at that point I began feeling the worst pain I have felt in my life. The best way to describe it is that I felt like I was at the bottom of the ocean and some one was sitting on my chest, crushing my lungs and tearing my guts from my body. The doctor left and it took me a few minutes to catch my breath. My boyfriend held me and we waited for my postpartum room to be ready. Once we were moved, Anthony called the NICU multiple times to find out when we could go see our baby. I was in so much pain from the stitches. I was on so many drugs that I didn’t even know the name of. We finally got to see our baby early the next morning. Ant was in the NICU for thirteen days and even on the day of discharge we knew very little about why he was sick or how he got sick. All we knew was that he had premature lung disease and that he was tachypnic.
Look at his sweet face! How lucky am I!?
Coming home. After spending 12 or so hours a day at the NICU with my baby, I was relieved to finally bring him home. On the day he was discharged he looked like a completely different baby, compared to how he looked at the beginning of his NICU stay. While he was in the NICU he was jaundiced. Although he was treated with a bili light, his bilirubin levels were still high when he was last checked. So, we were referred to a pediatric GI doctor to make sure everything was okay with his liver. I had been breastfeeding him, so the NICU nurses thought maybe it was just breast milk jaundice. When we saw the GI specialist, she was very concerned. Not only were Ant’s bili levels still high, he was also very lethargic and not waking up on his own to eat. She was on the fence about possibly re-admitting him. She told us that his high bili could be from a range of things… anything from liver disease to galactosemia (a condition that can lead to mental retardation if it is not caught early). Since she was worried about his liver functions and the potential galactosemia, she had us switch Ant from breast milk to a formula called Pregestimil. When we left her office, we immediately went to Wal-Mart to buy the formula. They didn’t have it. We checked Target, Babies R’ Us, CVS, Rite Aid and three different Walgreens. It took us five hours to find the formula. Ant slept the whole time, which was very concerning. Ant has been on the Pregestimil for the past two weeks. I have been pumping and waiting to hear back from the genetics doctor about the galactosemia. Finding out that I had to stop breastfeeding Ant for some time broke my heart. It has been so hard and every day I pray that we hear good news. Since Ant now has thrush, feeding him is such a long process. I wash all his bottles once a day with apple cider vinegar in the dish washer. Before each feeding I have to sterilize his bottle and all its parts in a microwave steam bag. With all that and making sure I pump at least 8 times a day, its almost impossible to find time to feed myself.
Looking ahead. We now know that Ant has a heterozygous alpha 1-antitrypsin deficiency, which isn’t a huge deal but it may be why his bilirubin levels are still high. Since it can potentially cause liver and lung disease it is something that we will need to keep an eye on. Ant is still tachypnic, so he is burning more calories than a normal baby. We have had to increase his formula to 24 calories per ounce and may have to increase his caloric intake again if he doesn’t start gaining weight. He will have to see a pulmonary doctor until his breathing becomes more regular. Some time next week Ant, Anthony Sr. and I will be having a full genetic screening. I hope that soon we can rule out all the really scary stuff that may be wrong with Ant and that I will be able to begin breastfeeding him again. This past month has been the hardest part of my life thus far, but I wouldn’t have it any other way. I love my son so much and for now I am just going to enjoy him and be the best mother I can be.
Have you had a baby in the NICU? Have a similar story? Know anything about galactosemia or newborns with metabolic disorders? Need some one to talk to while you go through the scary time of having a NICU baby? Please share in the comments below.