Isla's Medical Fund

Monday, September 30, 2013

When Days Feel like Weeks

It’s hard to believe that it’s only been five days since we’ve welcomed little Isla into the world. There has been so much that has happened that it feels more like a few weeks ago, rather than only a few days. Both Randy and I apologize for not being able to answer everyone’s questions individually, but as you can only imagine…time is not something we have a lot of right now.

For those of you that don’t already know, we welcomed Isla Pearl Smith into the world at 11:38 am on Wednesday September 25th. She came into the world screaming, pink, eyes wide open, weighing in at 7lbs 8oz and measuring 20 inches long. She is a beautiful healthy baby girl! And just as we suspected, she was born with a complete bilateral cleft lip and palate (CBLP).

 Both, Randy and I, fell in love with her at first sight. And the special bond that Randy and Isla already have, words cannot even describe. The look of contentment, joy and fulfillment in Randy’s eyes when he holds her just melts my heart. And the way that Isla looks at can tell that she is definitely going to be a daddy’s girl. And as the days move along (even though it’s only been five) that bond they have just grows stronger and stronger…so much so, that Randy has to leave the room so that Isla will let me feed her, otherwise she just screams and screams for him to do it. Some have asked if that makes me sad or jealous, and truthfully….I wouldn’t want it any other way. Just being able to witness that bond they have makes my heart feel complete and whole.

We are so thankful that we found out that Isla was going to be born with a cleft when she was only 23 weeks in utero. It has given us the chance to prepare for what is to come, but it still hasn’t been easy. Since Isla was born with a CBLP feeding and breathing was definitely going to be the first obstacle that Isla, and us, were going to have to overcome. There was quite a bit of noise or gurgling with her breathing, almost as if she was choking on her tongue, but all the nurses seemed to think that was normal… especially for a baby with a cleft.  So, Isla seemed to have the breathing part down.

Now for the feeding. I was hoping that I was going to be able to breastfeed, but because she has no palate, she doesn’t have the capability to create suction…so that idea went out the window. Now we had to find out what bottle she was going to accept. Easier said than done… Just to give you an idea of what these bottles are like…you have to squeeze a little bit of milk in her mouth as she tries and sucks…so during the feedings she would spit everything up. There are only three bottles that are conducive to cleft babies and Isla wasn’t accepting any of them.  

Randy and I were terrified to go to sleep that night because we feared that Isla would choke, so we had decided to take turns sleeping.  At around 9pm the lactation and nursery nurses took her from us, so that they could try and feed her. They also wanted to hook her up to monitors to make sure that her vitals were ok while she was feeding and not having any desaturations in her oxygen, heart rate or breathing. While we were thankful we were going to be able to get a little bit of sleep, something didn’t feel natural about handing over our newborn little girl to someone else…but we knew it was for the best.

When we woke up in the morning and met with the nurses and the attending neonatal doctor, they told us that they wanted to take Isla to the NICU in Redlands (Unfortunately  the area we live in does not have a NICU of their own, so we have to travel an hour away to get the care she needs). Isla did not do any better with them throughout the night and only got in 10ML of milk at the most,  and her oxygen actually de-sated to somewhere in the mid 50’s while they were trying to feed her. (Anything below 92 is considered low oxygen).  

We knew before Isla was born, that there was a possibility that she was going to have to go the NICU, but it still didn’t make it easy to hear.  But like I said…we had already prepared ourselves for the worst, so when we were following an ambulance out to Redlands that was carrying our newborn daughter, we were surprisingly strong and OK. I feel for those mothers and fathers that are not as fortunate as Randy and I, and find out about the cleft when their baby enters the world. I can guarantee that if I didn’t have 20 weeks to mentally prepare myself, I would probably have been committed to a psychiatric ward.

We weren’t allowed to see Isla as soon as we arrived to the hospital.  They had to admit her, try and feed her and check her vitals to make sure she was stable.  They also gave her a feeding tube to help assist with the feedings should she need it. Once we were finally allowed back to her room, her practicing nurse came up to us and asked us “Why exactly was she admitted to NICU again?” Apparently this nurse had absolutely NO trouble feeding her and she took down a whole 40ML of formula on her own with no spit up! And even better…her vitals remained completely normal, so no desaturations in oxygen! Maybe we didn’t give Isla long enough to try and figure this hard world out? None the less…she’s at the NICU, so it’s better to be safe than sorry, so they will be monitoring her for at least a few more days.
Right about now is when things started getting really hard for me. Although I was prepared for most things that are cleft related, there was one major thing that I wasn’t prepared for.  I wasn’t prepared to have to split my heart into two separate places. What I mean by this is…I also have a two year old at home, so when I would leave her to spend time with Isla it would kill me inside and then when I had to leave Isla to go home to Gemma that would kill me too. No matter where I was, I felt as if I was a terrible mom for not being able to be with the other.  I have never wanted anything more in life than to be able to have my heart under one roof again. I wanted more than ever to get Isla home and by the sounds of everything it was looking like we were going to be able to do that by Sunday!

Since Isla has been at the NICU, she has had absolutely no trouble eating. She  pulled out her own feeding tube less than 24 hours of being there. She is now taking 2oz every 3 hours and has not had any issues, so we were sure that Sunday was the day that she was going to come home. Sunday was going to be the day that she could meet her big sister. Sunday was going to be the day that we would be able to start our normal, yet crazy lives under one roof. But all Sunday turned out to be, was the day that she had a desaturation and the day that they were going to decide to keep her longer.


I remember driving up to the hospital on Sunday with this big sense of joy and happiness. Randy  said he felt like he was going to pick up a new car and take it home. (to translate from boy language, that meant he was really really excited).  So you can imagine the disappointment we felt when they told us no…she’s staying.

They have now ordered a sleep study to be done. Apparently babies with clefts have a higher risk of sleep apnea related SID’s due to obstructive apnea, so the doctor believes that this test is extremely important. I completely agree…breathing is not something to mess with…ESPECIALLY when you hear the word “SIDS” as part of the sentence. So to circle back to the first few minutes of her life, it was possible that she was choking on her tongue, but we won’t know the answer to any of this until Wednesday.

As of right now, that is where we are…waiting on the sleep study.