Day 49--The Last Day in the NICU

Brynn is home! Last night went even better than the first night as Blaine and I tried to work out our "rotations." She slept well between feedings and woke up to eat all of her bottles all day. She even seems to be getting hungry sometimes between feedings and the nurses told us today to transition from such regimented feedings to a more relaxed schedule of "feeding her when she seems hungry." Makes intuitive sense for people bringing home a full-term newborn, but we know we still can't let her go more than 3 hours without eating no matter if she seems hungry or not.

Leaving the NICU was a bit surreal for me. Of course, we had an entirely new nurse today so I was sad that we didn't get to say good-bye to any of the many nurses we have grown to love. Although excitement was clearly the emotion of the day, I was surprised to find myself tearing up a bit as we left the NICU. It had really become our "home away from home" over the last 7 weeks, and we've met some amazing people who've taken great care of Brynn. We'll definitely be sending Christmas cards with pictures of Brynn the "big" girl. Speaking of weight, she weighed in last night before discharge at 4 lb 0 oz. So she made it to the 4 lb mark before coming home.

Now we're beginning a new stage of adapting to newborn life. Riley doesn't come home until tomorrow night so we have a little time to adjust here before we add a 3 1/2 year old to the mix. She says she's very excited to meet her baby sister, but we're not too naive to realize that she'll have some adjustments to make in the days to come. It will feel good to have the whole family together even though I'll likely be pulling my hair out at least once a day. Despite the need to keep Brynn at home as much as possible for a while, we already have two doctors appointments this week. She sees her pediatrician for the first time this week and we have a follow-up eye exam as well.

We can't possibly begin to express how grateful we are for all the support and the thousands of prayers that have been said for Brynn. This has truly been an amazing experience for me--amazingly bad and amazingly good at the same time. I definitely feel like Brynn is the closest thing to a miracle I will experience in my lifetime, and I know that literally hundreds of you have walked this path along with us. I'm planning to print out all the blog entries and comments so that Brynn can read them someday.

I know I'm behind on getting some updated pictures posted, so I'll try to do that for tomorrow's post.

Day 48

We've survived our first night alone with Brynn. She has actually been a really good baby and I didn't feel nearly as overwhelmed this morning as I did the first morning after we brought Riley home. She has to eat every 3 hours which means I have to get up and pump before she's ready to eat. She is also receiving eye drops 4 times a day for her eye infection, vitamins twice a day, and iron supplements twice a day. I'm working on a chart to try to help me keep it all straight and make sure I don't screw up the "when" and "how much" of all her medications. She's been a trooper on her bottles since our little set-back yesterday evening. Blaine has been worried that her breathing was congested so they also gave us some saline drops for her nose and they did a viral culture to make sure she hasn't caught some bug. The results won't be in for 24 hours (around 9:00 AM tomorrow) so we're hoping the results are negative. If not, it's very unlikely that they'll let us come home. But, she's not showing any signs of sickness and her lungs look good so it's really a precautionary test.

I'm feeling more confident now that I am getting to assume full-time care of her. I know I've done all this before with Riley, but it's amazing how much you forget. One thing that was quickly familiar was the feeling of sleep deprivation. In a weird way, though, it was somewhat welcome because it's such a "normal" part of having a baby.

Cross your fingers and toes that all goes well tonight and we'll be heading home tomorrow!

Day 47

It's official--she's really our baby!! We had a busy day getting ready to do the Care By Parent program. My parents got to our house late last night and left early this morning with Riley. Brynn had to have a car seat test today which meant strapping her into a car seat for 90 minutes to see if she could tolerate being upright for that long. Although she passed the test, the administrator is actually recommending that we bring her home in what's called a "car bed" because the car seat did not fit well. So, tomorrow she'll have to be fitted for the car bed and we'll have to make the arrangements to "lease" the apparatus for the time-being. I was really comical to see her strapped into a car seat. We had to roll up blankets to place on either side of her just so she could stay upright. She looked like a baby doll that Riley would put in a car seat while pretending. She also had to have another blood transfusion today which took 4 hours and required yet another IV insertion and removal. Her doctors said they wanted to send her home "tanked up."

Finally, at 6:00 PM, the nurse wheeled her into our room and I officially took over the role of "parent." Blaine had to teach a night class until 8:00 so he didn't get to join me until almost 9:00. When she got here at 6:00, the lactation consultant came in the room with me and observed a breastfeeding session. She brought a special scale that takes a weight prior to nursing and after nursing to determine exactly how much milk the baby consumed. Brynn latched on like a champ and nursed for 5 minutes. Her "pre" weight was 1862 grams...and her "post" weight was 1862 grams....meaning she got absolutely zippo. Not good for my breastfeeding self-esteem, but good information to know! So far, we've given her 2 bottles on our own and she's only taken 25 of 35 ml each time. Blaine is already getting anxious and I'm trying to remain calm, assuming that she'll wake up and eat well the next time. I'd already forgotten how long it takes to feed a newborn. It's taking us an hour to feed her and get her in bed and by that time I will only have 1 1/2 hours before I need to pump for the next feeding. Not bad during the day, but the nights will be tough. So, we're finally feeling like we have a real newborn--the good, the bad, and the ugly!

Day 46

I had my 6 week post-partum doctor's appointment today which managed to make me miss the 9:00 AM feeding and part of the noon feeding. When I finally arrived on time for her 3:00 PM feeding, her nurse told me that Dr. Slack had written in the orders to be prepared to go to Care By Parent tomorrow evening. Even though we knew this was coming soon, I still felt a little shocked. She gained less than an ounce last night so she is still at 3 lb 10 oz and I guess I just didn't think we'd be heading home under 4 lbs. So, the plan as of this evening is to go to Care By Parent (the program where you sleep with the baby in a hospital room across the hall from the NICU) for Thursday and Friday nights and then come home sometime on Saturday. Is this really happening??!! Blaine and I have been scrambling since 4:00 to get all the last minute things done. Thankfully, my parents are coming at the drop of a hat to get Riley...the dogs are going to the kennel...Blaine's still hanging the drapes in the nursery now and it's almost midnight! It feels like I am schedule for an induction tomorrow, like we somehow get to "redo" the whole birthing thing and spend a few nights in the hospital and then bring an actual baby home with us.

The nurses have been giving me instructions on how to give Brynn her iron supplements (so that she can improve her ability to make red blood cells), how to mix her formula caloric supplement with the breastmilk, etc. I have been trying to slowly wean myself from looking at her monitors to make sure she's doing OK when she eats or I'm holding her. It will be hard not to have that reassurance but I know we'll become more confident as the days go by.

I'm off to pack my "hospital" bag and pack a bag for Brynn. I guess the best part is that I don't have to worry about going through labor and delivery to get the prize at the end...I've already done that part! It will be a lot easier on me in the hospital this time--this is what it must feel like to be the father! I'll bring my computer and keep everyone posted.

Day 45

The "discharge" talk has continued today...the nurses have even started squirreling away the formula we will need at home to add to the breastmilk Brynn gets. I've learned so much about feeding and infant nutrition these days that I will have lots of interesting things to talk about at parties from now on. For example, I now know that breastmilk has 20 calories per ounce. They want Brynn getting 26 calories per ounce of food so we have to mix in formula to "soup" it up a bit. They are also pretty sure that she is going to need to come home in what they call a "car bed" rather than a normal infant car seat because she is too small. The nurse estimated that we will be in Care by Parent sometime this weekend and that she is likely to discharge (if things continue to go well) be early next week. YEAH!!!....and YIKES!!! It's odd to have such competing emotions of extreme excitement and extreme anxiety.

Brynn's weight was up to 3 lbs 10 oz last night. She hadn't gotten weighed yet when I was there tonight, so I'll have to wait until tomorrow for that news. She started having some trouble with spitting up today. One of her night nurses in the last few nights suggested that she be allowed to eat more than her alloted milk because she thought she might still be hungry at times. So, they had begun to put somewhere between 40 and 45 ml in her bottle when she is technically only supposed to need 33 ml per feed. Well, she has often been taking around 40 ml, but she started spitting up as well. So, I tried suggesting that maybe she is being overfed. The doctor evidently agreed because when they called her to let her know about the spit-up, she requested that they reduce her feeds back to 35 ml. This might seem ridiculous to be discussing such small quantities, but if she continues to spit up so much they are going to put her on an anti-nausea medication.

We'll keep you posted on weight, spit-up, and discharge!

Day 44

Brynn decided that she wants to come home last night and went ahead and pulled out her own feeding tube! The nurses decided to go ahead and give her a try without her tube in and see how she does. If she is able to eat at least 30 ml at each feeding for several days (and continue gaining weight) then she is going to be coming home really soon. The other big news of the day was that she was moved out of her isolette into a "big girl bed" today. She is now in one of the open air beds that typical newborns are placed in at the hospital. She will have to prove that she can maintain her own temperature outside of her isolette. These are the last two steps among the many steps she had to achieve before coming home. It really seems as if we are going to be in the Care by Parent rooms really soon. Once again we are scrambling to get last minute things ready at home. We realized that we haven't even gotten the infant car seat out of the garage and cleaned up, and we don't even have a single bottle in the whole house! You'd think after 44 days we'd definitely be ready, but I think we haven't wanted to do all the final preparations because it might "jinx" us or something. We're heading off for her 9:00 PM feeding while Chelsea stays here with Riley for the evening. Let's hope there's good news about her last feeding!

Day 43

Brynn weighed in at 3 lb 9 oz last night. I can't believe we're about to start counting down until the 4 lb mark! She is doing really well and we keep holding our breath afraid that things are too good to be true right now. Having said that, I am a little concerned that she might be getting some sort of cold. Her left eye has been "gooey" for days but it was almost sealed shut this afternoon with a lot of yellowish discharge. I also thought she sounded a bit congested when breathing out of her nose. Let's just hope this is all a case of severe parental paranoia, but any sign of infection is so worrisome to us right now.

The NICU was actually a really rough place to be today. We have become "NICU friends" with a couple who gave birth to identical twins with twin-to-twin transfusion at 29 weeks. One of the twin boys (Caleb) is in an isolette next to Brynn's while the other twin (Luke) is in an isolation room. Calbe has been progressing similarly to Brynn although he is still 2 weeks behind her. Luke, however, has struggled with being on a respirator and having a serious brain bleed. Evidently, last night, Luke's condition worsened and he was gone this morning for more tests. When he arrived back, I was sitting with Brynn and his parents at our isolettes. After about 10 minutes the nurses for Luke started yelling for a doctor because Luke had become "extubated" meaning he was no longer breathing on the respirator. I sat for about 5 minutes watching nurses and the doctor work to resuscitate little Luke in front of his parents. I couldn't take it anymore at that point and felt like his parents surely needed privacy so I left the unit. I later came back to find out that they were able to stabilize him but he suffered from several seizures during the process. I can't seem to get the images out of my mind all day and I keep thinking that it could so easily have been Brynn in that situation. I am totally humbled by the grace of God in our lives right now, while I am praying with all my heart for Luke and his family.