Set Backs

So I left the last post with the anticipation of going home very soon. Things are turning out differently. We were pretty sure that they were both going to be home either this weekend or by the middle of next week because they were both eating well, had gone a couple days taking everything by mouth, gaining weight, and doing wonderful. Then the NICU set us up with a Hotel Stay where the parents stay the night in the hospital with their baby(ies) in a post-partum room right around the corner from the NICU. The purpose is to give the parents a test run at being with their baby(ies) all by themselves but with nursing help just a few feet away if is needed. When parents have a Hospital Stay it means their baby(ies) are just a couple days away from going home. It's sort of like the rehearsal dinner before the wedding, everything is set it's just a formality and another reason to celebrate a union. It's what parents look forward to, it's the hope of being able to go home with your baby(ies). Tuesday night we were alerted to the fact that we might have a Hotel Stay on Wednesday. Then Wednesday came and we were told that we would in fact be scheduled for a Hotel Stay. Unbelievable. Visions of being alone with our babies in a room without beeping and we could do as we pleased. It was a relief, a sense of arrival at the end of a long race.

As Wednesday unfolded we learned that the twins were going to have an eye exam, no big deal, they've had them in past and passed just fine. Not this time. Sam passed but Amelia did, she has Stage I ROP (retinopathy of prematurity), a very common and usually benign and self-resolving complication of being born early. It's really not that big of a deal. There are 4 stages, she has the first, and if it did progress it can be treated surgically and the outcome is usually good from those procedures. The ROP is just an irregular growth of blood vessels in the back of the eye which causes problems. The bad outcome of ROP is vision impairment or blindness, that's the truth, but also most babies who get it get the mild form like Amelia and they get better without any lasting effect. So it's sort of like the hole near the heart (PDA) scenario all over again. The treatment at this stage is waiting and watching. However, because Amelia went back on oxygen she will be staying in the NICU for at least 2 more weeks until her next eye exam. The reason she has to stay is because she is getting oxygen through a mixer that mixes 100% oxygen with room air and it is able to deliver a pretty fine percentage of oxygen as opposed to what we could take her home on which can only give about 100% oxygen. With 100% oxygen it can exacerbate the ROP and cause it to get worse, therefore keeping her in the NICU. Now, I am not sure if she at some point within that 2 week period no longer requires oxygen if we can bring her home, that is something we will have to explore. So, we were pretty upset about that, needless to say.

Then, we had a very hard time getting Sam to take his bottle and drink the required amount of milk for his daily needs, which would preclude him from his trip home but he fortunately ate just enough to meet the quota so he was saved from the grips of the NICU. Until today, he has been off caffeine now for about a week and the old discharge criteria said that the baby had to be off caffeine for 2 weeks before they could be discharged so the neonatologist, the doctor, won't sign any discharge orders for Sam. He was scheduled to come home Saturday. The new criteria, which this doctor does not follow, says it is okay to discharge them if they have been off caffeine for 1 week. She said she won't sign it but maybe the doctor who is taking over for her will sign, we'll see how that goes. It's not terribly bad if he has to stay because then they'll be together longer and we won't have 1 baby home and 1 baby in the NICU for as long, but it would still be best to have him home.

So, there's been a lot of anticipation and a lot of excitement and a lot of let down these past couple days. There has not been much sleep. There has been confusion, uncertainty, and anxiety. There have also been prayers, many prayers. We want what is best for the twins, but we also want out of the NICU and to have a whole family finally. In God's timing it will be perfect, we just have to internalize and believe that.