This is a post that I have been waiting to write for almost a week. I waited, in part, because my husband and I needed to digest the information. Because of her challenges and a few physical anomalies, my husband and I decided to do some genetic testing on Lyra when she was admitted into the hospital this last time. Before getting discharged last week we received the results. Lyra has, not one, but two very rare genetic disorders.
Lyra has been diagnosed with trisomy 9p syndrome and 16p deletion syndrome. Not only are both very rare on their own, but there are no documented cases of a child having both. That doesn’t mean it hasn’t happened. After all, genetics is a new science. This leaves my husband and I in a tough situation. There is little information out there about either syndrome (and nothing about her specific diagnosis for 16p that I have found). For both syndromes, severe intellectual challenges have been documented. Physical challenges are also a likely possibility. However, in the case of 16p deletion syndrome, there has been at least one case of a child have an IQ of 130ish.
Basically, we now have more questions than answers. We have absolutely no idea what expect. We could have a child with mental retardation and extreme physical challenges, or a child with some physical challenges and/or intellectual challenges (such as a dyslexia). Or we could have anything in between. We literally have no idea. This is why my husband and I have needed time digest everything.
So, where do we go from here….. Honestly, we don’t really know. At this point our plan is to celebrate the accomplishments she archives (like smiling, cooing and making eye contact), and seeking out help when she struggles with something. We recognize that she will have major challenges, but if we play the “what if” game too much, we won’t be able to handle day-to-day life or enjoy our little girl.
So here we are.
So, Lyra is finally home. The sent us home with an NG tube so that we don’t have to worry about her not taking her whole bottle. While she has been making progress with eating, she still can’t seem to take the whole thing by mouth. She also still throws up occasionally. I bet that the occasional throwing up wouldn’t both most parents, but for my husband and I, it makes both of us panic. We are both truly traumatized by watching her throw up feed and after feed. Some days, as we fed her, we would silently pray that anything we gave her stayed down. While she now only throws up once every few days, it still makes my heart sink into my stomach. I can’t help but think, “are we going to have to go back to the hospital? Is she going to be okay? What did I do wrong this time?”. I just want my baby girl continue to grow. She is over a month old and still fits into newborn clothing. While this may be normal for premies, she was full term. At least when she was weighed before we left the hospital she has finally crossed into the 8lb range. Maybe being home won’t feel so terrifying one day. For now, my husband and I are just doing the best we can to keep our cool.
The thing I keep having to remind myself while Lyra is in the hospital is that I can’t take care of her if I don’t take care of myself. So, this morning I am going to my 6 week follow-up after giving birth. It means that I will miss rounds for the first time in the 21 days she has been in Children’s Hospital. My husband is there, but it is incredibly tough for me to not be in the room talking to the doctors. However, I know that it is very important to be checked out by the doctor post labor. I may not always be the best at taking care of myself. I can’t bring myself to stay home and go back to Muay Thai. I don’t have time to go to the gym and make rounds in the morning, and it is normally closed when I get home at night. Once I am in the hospital, I have found it impossible to leave her to go for a run/walk in the are. Plus, it is beyond hot and humid right now. So, the least I can do is go see my doctor.
So, my morning has been surreal. I am watching last nights episode of So You Think You Can Dance, drinking coffee, and eating breakfast. I feel kind of like I did before I had Lyra, but with this anxiety bubbling just under the surface. Honestly, I am trying to just maintain my cool and not say “screw it” and head out to the hospital. I just keep reminding myself that this is what is best for my baby. Hopefully my husband calls soon with additional information from the doctors.
Blowing my husband a kiss after feeding the baby
Todays post is more of that thank you. I am truly humbled by the amount of support we have received from friends, family, and even strangers. My family has been incredibly supportive, despite the fact that they can not always physically be here (the live on the other side of the country). Our friends, both locally and otherwise, have also been wonderful. Two of our friends have been taking care of our dog (our first born) for over a week. We asked them to watch him for one night and they have taken care of him ever since. The words of encouragement and offers to help out with anything/everything have been greatly appreciated. My husband and I are not always the best at accepting (or asking for) help, but we have learned to embrace what has been offered. Beyond the friends and family, I am humbled by those who I do not even know who have reached out and shared their stories and kind words. All of this reminds us that, although we are experiencing challenges we could have never prepared for, we are blessed. From the bottom of my heart, thank you all.
Tyke and Lyra when we first brought her home
Our first Father’s Day
It’s funny how you can go through a whole day feeling so positive, only to have everything turned upside down by a single number. When I came in this morning we found out that Lyra had lost a little bit of weight. The doctor increased the amount of milk she is supposed to take and we moved on with our day. Throughout the day she did great. She was taking more orally than she did yesterday and she didn’t have any trouble keeping down the extra volume pumped in via her NG tube. Her personality was also coming back today today. She spent a long period of time awake and checking out the world. We spent much of the day just looking at each other and making faces. She even did a little tummy time in her crib. With all of these positive indicators, I decided to stay until she was weighed again. I was really excited. We had done everything right today and she looked great. And then the numbers came in….. 3.445 kg (7 lb. 9.2 oz). It is a full oz less than she weighed yesterday. She should be gaining an ounce per day, not losing it.
I just don’t understand. We are doing everything right. The surgery fixed the laryngomalacia. She is eating more AND keeping everything down. I am actually eating regular means and most of them have solid nutritional value, so my milk should be okay. I make sure to eat protein, fresh produce, and fats. Her reflux seems under control…. I just don’t get it. What are we doing wrong? She has to do two things to be able to come home: 1) Consistently eat and keep her meals down, 2) GAIN WEIGHT. With the NG tube we have #1 taken care of. I don’t know how we will fix #2. I don’t even want to go home tonight and see my apartment full of my baby’s things, only to know that I have no idea when she will be home again. I just want to be home and sit on my couch with my baby, husband, and my dog.
Living (at least part time) in the hospital is a unique experience. At this point, we still do not have an exact timeframe for when Lyra will get to come home. She continues to make great progress with feeding, but we are still having to utilize the NG tube. Here is what an average day looks like (starting around 12 AM).
- 1 AM: My alarm goes off telling me I need to pump
- 2 AM: I wake up and realize that I haven’t pumped. I stumble into the kictchen, grab a glass of water and the tools I need, put on my special special pumping bra, and hook myself up to be milked. While pumping I proceed to check Facebook, flip through endless tv channels, and play solitaire on my phone. This is all followed pouring my milk into freezer bags, cleaning all of my tools, and likely grabbing a small snack.
- 3 AM: Stumble back into bed
- 5 AM: My alarm goes off telling me it is time to get ready to go back to the hospital
- 6 AM: I wake up with my phone in my hand and realize that I need to get my butt out of bed
- 7 AM: Drive to Hospital
- 8 AM: Walk in and see this beautiful face
- 9 AM – 9 PM: Run through the following activities multiple times in no particular order
- Feed Lyra
- Feed Mommy
- Flip through the TV stations, decide nothing is on, turn on an audiobook, fall asleep
- Clean pumping tools (does not always come directly after pumping because I seem to be incapable of focusing enough to finish a task)
- Talk to doctors
- Talk to nurses
- Change diapers
- Fall sound asleep
- Take pictures
- Poke at Lyra
- Start blog post (it normally takes me hours to finish it)
- Call Mom (aka Grandma)
- Take 2 hours to convince yourself it is okay to leave the hospital
- 10 PM: Arrive at home and eat “dinner”. Pump, clean tools, cuddle with husband, miss my dog, and feel guilty about not being at the hospital
- 11 PM: Crawl into bed
In other words, my days are long. It’s been 8 days so far for this hospital stay. Hopefully it won’t be much longer, but that all depends on my little one. Right now we are letting her take her time to get her feet under her.
Sometimes I forget that the world keeps moving outside of the bubble I have been in. In fact, today is my sister’s wedding. She has had her own trials in life, and today she is marrying a wonderful man. Jason not only loves her deeply, he treats her children like they are his own and obviously cares for the rest of us. As an extra bonus, he has two beautiful little girls to add to the mix. We really are a “more the merrier” kind of family and we are so happy to have them officially join our crazy group.
Unfortunately, the wedding is in Hawaii and we can’t be there. In honor of the wedding (at least in my mind), Lyra is making major progress today! She is totally off oxygen and doing great with her oral feeds (aka drinking from a bottle).
Tonight, I have two things to celebrate. My baby is getting better, and we will be joining my family via FaceTime for my wonderful sister’s wedding. I am even dressing my little one in the dress she was going to wear if we had been able to go (pictures to follow tomorrow). I feel very blessed today.