The Baylor Family Blog

Well it actually happened. Yesterday we were able to bring our precious daughter home. She spent a whole day here today and things went really well. Sorry for the lack of updates, but I guess that happens when life takes over. Thank you to everyone who has helped us these last couple of days. We would have gone insane without you. I’m sure Kimi will give a better update later, but I thought I should at least pass on that we’re home and doing well.

This morning has been quite busy and my head is swarming with details as we get ready to go home…

–Abi passed her hearing screening! Unfortunately, they showed up while she was feeding, so she was pretty squirmy during the test making it last even longer! And the volunteer put the adhesive ear cover right on Abi’s IV dressing. I refused to let her take it off not wanting Abi’s IV to come out with only one dose of antibiotic left. So she looks a little like an alien at the moment.

–We have a portable oxygen tank to bring home with Abi and will need to call the oxygen company as soon as we get home to get more tanks. Abi’s oxygen saturation dropped this morning, so she was put back on oxygen.

–Abi is currently in the NICU getting a chest x-ray.

–Abi’s bilirubin level only dropped from 9.1 to 9. At least it did not go up and she does not have to go home with bili lights or anything. However, we will need to bring her into the lab to get her level checked tomorrow.

–Abi has her first visit at the pediatrician’s office scheduled for Monday morning.

–Abi managed to kick off the security bracelet on her ankle this morning while she was sleeping quietly in our room. I heard the alarms going off in the hallways, but never imagined it was because of my baby until the nurse came in and said, “I heard my baby is missing!” Opps

–Abi will have her last dose of antibiotic in a couple of hours! Then we should be discharged home…

Oh, and Eli isn’t feeling so hot still. He’s been extra clingy and sleepy, but has not vomitted this morning. He is likely fighting off a virus of some sorts. Please pray that he recovers quickly and the rest of us stay healthy!

I’m not sure there’s a more scary, annoying and dreadful sound than that of Eli gagging. And to think it all started so well! He took a great nap yesterday afternoon: 3.5 hours. I’m not sure he’s ever slept that long. He got up and we started playing and getting ready to go in and see Kimi and Abi. Then it hit: the sound. I should warn you that I’m going to use this post as a cathartic mechanism (i.e. this is going to get graphic). I caught most of it in my hand and managed to catch him in the other and get him over to the hard floor from the carpet (Barf on carpet is really bad). He unloaded most of his stomach. Ugh! Well, I got him stripped down and up to the tub. Once I got him calmed down I convinced him that a bath was a really good idea. That gave me a couple of minutes to cleanup the chunks downstairs.

I got most of the chunks taken care of when I heard Eli hollering for me. I ran upstairs to see what was going on, only to find four nuggets left in the tub. Gross. So I got Eli out of the tub dried off (fortunately they were well formed poops and didn’t go everywhere) and dressed in his pajamas. We turned the DVD on to Veggie Tales and I finished my cleaning, which now included sanitizing the tub and toys and scrubbing the floor where he barfed.

I was supposed to be bringing food over to Kimi during all of this (we were about to leave when he barfed). I talked a couple of friends of ours (Thank you Dave and Brigette) into coming over and watching him after I put him to bed, at 7pm, so that I could go bring food to Kimi. While I was in the Chick-fil-a drive through Brigette called and let me know that Eli barfed in his bed. Ugh! Please pray for Eli as Abi and Kimi are coming home today and I really want him to be feeling well.

OK, well I feel better and hopefully your keyboard isn’t covered.

We finally made it to Discharge Day! Abi is to be discharged from the NICU today after her final dose of antibiotic at 4 p.m.! This past week has been long, and I am relieved we finally made it today! The night shift nurse was able to wean Abi off of oxygen last evening, and she has been in the room with me during the night without oxygen. I will be sending Abi back to the NICU shortly for another dose of antibiotic and the nurse will monitor her O2 sat at that time. I’m hoping everything is still stable, and she will be able to stay off of oxygen!

Abi’s weight is back up to her birth weight, 5 pounds, 5 ounces! That is music to my ears! She has been eating A LOT tonight, too! The nurse will be drawing another bilirubin level this morning. Apparently her bilirubin went up yesterday morning from 8 to 9. I’m hoping her level has decreased by today. She definitely appears less yellow than a few days ago.

During my visit with the pediatrician yesterday, I asked him several questions trying to guage if any of the factors above from oxygen to bilirubin levels would make him want Abi to stay in the hospital any additional time. And the pediatrician assured me that none of those things will keep her in the hospital! However, the doctor said he will order a chest xray today if Abi still needs oxygen to rule out other causes that might increase her oxygen need.

I am so excited to be together as a family again! I know there are still LOTS of adjustments to be made, but I’m looking forward to starting the process!

Its been so nice having Abi with me in my room! Its been even nicer being able to follow her cues rather than the feeding schdule the NICU has had her on! I did send Abi back to the NICU for a couple hours last night because they needed to re-start her IV, give her IV antibiotic, trial her on room air, and I decided while they were at it, I’d let them give her early morning feed, too, so I could get a little extra rest.

Abi now has an IV in her head. Not so much fun to see, but I know its only for a couple days. I’m just hoping all the tape doesn’t take off her precious, soft hair when it comes out. It is also looking more likely that she will go home on oxygen. She wasn’t able to keep her oxygen level above 88% in the five minute trial they gave her. It will be a pain having oxygen at home, but we will learn to manage.

With discharge looking like it will be tomorrow, Matt and I are starting to think through things to be ready when we get home! Matt and Eli are going to run a few errands today picking up a few warmer preemie outfits and preemie diapers. We are also tossing around the idea of finding or borrowing a bassinet.

I will post more later, but we did get to introduce Eli and Abi yesterday. It was probably the typical toddler response, and Matt and I had quite a few laughs! But with Abi’s small size, the likelihood of having oxygen, and our very active and rambunctious (i know i spelled that wrong) little boy, we thought it might be nice to have a safer raised up place for our little girl!!

I walked into the NICU for Abi’s noon-time feed and was told some very exciting news: Abi could now stay with me in my “hotel” room at the hospital (which is just outside the NICU). The nurses will come to the room to check her vital signs and will bring her back to the NICU twice a day for antibiotics, but otherwise, Abi gets to be with me! This also means that she gets to be off all the monitors that seem to beep constantly every time I move Abi…so we get to feed without beeps now! We are able to hook her oxygen up in the room, and she has a portable oxygen tank when she travels between my room and the NICU. I can’t tell you what exciting news it is to have my precious girl in my care!!

The other very exciting news is that Abi’s culture from her spinal tap came back negative! This means she does not have bacterial meningitis and that her course of antibiotics will only be 7 days. We immediately starting counting up her doses, and she should be able to come home on Thursday! She has already finished up the course of one of her antibiotics, Gentamycin, and only needs a few more doses of Ampicillin!

Another step in the right direction is her bilirubin level dropped from 11 to 8, bringing her into the low-risk category, so the doctor discontinued her bili-lights and she is back in a normal crib again.

I’m still hoping she is able to be weaned off oxygen before we go home, but regardless, she can still go home on Thursday even if she needs oxygen. Her weight has dropped down to 5 pounds, 1 ounce, which isn’t terribly concerning…but I’m also hoping she starts trending back up so that her weight does not become an issue.

So we are taking a deep breath and seeing the light at the end of the tunnel. We’ve been trying very hard to keep perspective throughout everything. I will admit some moments have been easier than others. This good news has done a lot for our spirits.  And we praise God for this positive progress, knowing He has Abi in His hands.

Abi is now on a tiny amount of oxygen. She was able to recover from her dropping oxygen levels pretty quickly during the night, but after her 6 am feed, she couldn’t keep her oxygen level above 88% for more than a few seconds. She is only on 0.25 L of oxygen, and I’m holding out hope she will be able to wean off that before going home! Her oxygen saturation level immediately went up to 100% after the oxygen was put on, so hopefully the little extra help will make her little body feel better, too.

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INFECTION: We learned today that Abi’s infection is a rare form of strep called strep bovis. Our pediatrician had to consult with a pediatric infectious disease specialist because he was unfamiliar with the strain. The good news is that the antibiotics she is currently taking is effective in treating strep bovis. However, the dilemma is whether to treat her for 7 days or 14 days. With this type of strep, there is a 20% chance she has bacterial meningitis. Bacterial meningitis is treated with the same antibiotics, only the course is 14 days, not 7. After lots of discussion between Matt and I and the doctor, we decided it was prudent to have the doctor do a spinal tap on Abi to see if she fell into the 20% and had meningitis. The nurse told me Abi tolerated the procedure great and was back asleep within two minutes

MENINGITIS: The doctor sent the spinal tap to the lab for a culture. His initial impression of the fluid was that the fluid looked normal. The preliminary results from the lab also appear to be normal. However, we need to wait 24 hours for the final culture results to know for sure.

BILIRUBIN: Abi’s bilirubin level is down from almost 15 to 11. She still appears to be a bit on the yellow side, but she is making progress.

WEIGHT: Abi’s weight remains at 5 pounds, 4 ounces today.

FEEDING: Abi is starting to communicate her hunger instead of needing to be awakened for feedings. She is also taking a little more in today than she was ysterday and much more willingly! Its encouraging to see her desire to eat! I am thankful that my milk supply has been adequate to meet her needs. She is breastfeeding some, but getting the majority of her feeds from a bottle still. Between the infection, bilirubin, her small size, and being three weeks early, it may take a while before she is able to breastfeed exclusively.

OXYGEN: Despite everything going on in her little body, Abi has managed to stay off oxygen. However, just recently, her oxygen saturation levels have been dropping occasionally during feeds. As long as this doesn’t happen too frequently and she is able to recover quickly, she can remain on room air. However, the nurse said it may indicate she needs oxygen because feeding could be causing too much stress on her body. So far, so good…but time will tell.

ELI: I enjoyed a wonderful visit from my little boy and husband this morning. I enjoy going on walks with Eli around the hospital and marveling at how much energy the little guy has! After holding a tiny baby, I look at Eli and am amazed at how big he is…and how grown up he seems to me now! Eli is enjoying lots of daddy time right now We were able to eat lunch together before going on separate ways to take afternoon naps!

So our precious little girl has a strep infection and will be in the NICU at least through this week. The blood culture will be able to identify the strain of strep by tomorrow, so Abi’s course of treatment and antibiotics may change then.

On a positive note, she had a great feed at noon-time and was so precious to hold. She got to have her first experience at “tummy-time” as it was time to flip to her tummy on the bili-lights. She was so precious, wanting to lift her neck and look around. If only I had my camera during that feeding time!