Monday, February 28, 2011

Our Life In The NICU

Everyone seems to be asking us what life is like in the NICU. I only really know a couple of words to describe it....amazing care and and an emotional roller coaster ride. Literally. We could not ask for better folks to be taking care of Brant but at the same time it is very tough. The hardest part is just living in two places, and the guilt of having to place your baby back in his isolette when you leave every day or evening from a visit. Especially with Brant b.c he is so alert, and a lot of times he will just stare at us once we put him back in to leave. I often wonder what he could possibly be thinking. Sometimes it just breaks my heart. I find myself having random cries a lot these days....probably part of it pregnancy hormones and part of it just pleading with God to let him come home soon...and to keep him healthy. I cannot believe how in love I am with someone that I have only known for 2 weeks, and how much I want to protect him from everything b.c he was born so early. I literally cannot wait to get up there to see him every single day....just to hold him and talk to him. And it is so hard when Chris leaves to go and see him in the evenings b.c I want to go again so much. But one of us needs to stay with Braden......so you just constantly feel torn. Then you have other things in life that you have to take care of (b.c those things don't just go away). So even though you would like to be up there 24/7, it is just not realistic. I think that is the best summary I can give at this point. That is the current perspective that I have after 14 days into this journey.

The other crazy part is all of the phone calls and bills that you deal with. It seems like we get statements about something every day and we just kind of weed through them. :) And then the enormous number of phone calls that we handle between doctors, maternity leave info, the NICU, nurses, cord blood banking, financial calls, insurance, etc. It is just nuts but praise the Lord for insurance! WOW!! We have never been so thankful for good insurance like we are right now.

I often think back to the fact that if his body would not have been growth restricted to 28 weeks then he would have probably been born at 4 1/2 lbs at least...maybe even closer to 5 lbs. It seems to crazy to me b.c at this point I cannot even imagine what Brant will look like at 4 lbs...much less as a toddler. But I know that God had a plan in all of this...and he is going to take perfect care of our precious little baby...just like he has since his birth.

To answer some questions about the basics of the NICU....it goes like this:
1) Brant has a nurse that takes care of him all of the time-24 hours a day. There are different nurses on different days but I think we have had most of them by this point. We are always meeting someone new whether it be a neonatologist, nurse practioner, a nurse, or the ladies that run the front desk up there. We are quickly becoming friends with some of them and sharing our lives. They take incredible care of him and they really do become attached. A lot of them will just come by to see him during the day...even if they are not his nurse on that shift.

2) There are babies everywhere.....in their own little areas or "rooms". Rooms just mean the babies own area with curtains that you pull around them/you for privacy. I think that our hospital has a 60 bed NICU and it seems to be pretty full. We see babies come and go, and then there are some that are tiny like Brant...that are in there for weeks to grow. Many of the babies that are in there are much bigger but sicker than Brant...as he seems to be one of the healthiest babies but just one of the smallest.

3) Someone from the NICU (doc or nurse practioner) calls us everyday to update us on Brant. They let us know about his feedings, weight, any issues, any labwork, what his warmer is set at for the isolette, if we can hold him more, his development, etc. If they do not call then they will meet us at his bedside and talk to us personally. It is so nice to have that personal one on one contact with someone that can let us know everything about our sweet son. And it is nice b.c most folks in there know about you and your family, your delivery, that Braden was a full term baby, when we come up there during the days/evenings, and what we need. In one conversation last week the doctor said that they do not like to tell parents that their babies are doing "super" b.c it can often give them false hope. However they told us that Brant really IS doing super...and for that we could not be more grateful. It is such a relief to know that we are basically just focusing on his growth at this point, and not really having to worry about other major things.

4) We started out the first days in the NICU with Brant having a nasal canula to provide him a little bit more oxygen. He also had his warmer turned up to the highest level to keep him warm (36.5 degrees C). He had an IV in his leg and a feeding tube through his mouth for all of his feedings. He was on light therapy to prevent jaundice. He was also being monitored constantly and blood work being taken daily. They were also watching him for sleep apnea which means that a baby will stop breathing during his sleep.

All of that is a big change from where we are just 14 days later. He has not been on oxygen since about Day 2 or 3. Amazing!! He never had any episodes of sleep apnea which is very rare especially on a baby his size. His light therapy was discontinued in the first week. Instead of having lab work done every single day, he just has it done once per week-on Mondays. His warmer is now turned down to 28.1 degrees C (27 degrees is the lowest it goes before they move to an open crib). So that means he is doing great regulating his body temperature. His IV was taken out in the first week and his feeding tube was moved to his nose. He is up to taking 3 bottles per day and the other 5 feedings are through the tube. He will keep moving to more bottle feedings per day and eventually the tube will come out. YAY!! :) They have been adding extra calories to the breastmilk through packets of Human Milk Fortifier. All in all it he has been doing just incredible. :) Grow baby grow!!!

5) Since he is such an alert baby, they put black and white pictures of objects in his isolette to give him something to look at. They said if he is staring at something then it might as well be pictures. That was nice of them. :)

6) A lot of folks have asked who all can go into the NICU. Well, two people can be in there with him at all times. Siblings can have one visit per week for 15 min at a time. We look forward to bringing Braden up there to meet his brother soon! :) All of the grandparents are allowed in at anytime by themselves. Other than that you get to name 4 people that you can bring in with you for the entire time that your baby is in the NICU. And that is all...just a very small group of people so they can keep track of all of the folks that come and go.

Couple of other notes about the NICU...they have a pretty cool support network. They have a program called Hand To Hold where they support parents of kids in the NICU. They assign you a mentor family that has been through what you are going through now..and they help you deal with everything that comes with this new life. Sign me up! :) They also have a group of volunteers that run the Ronald McDonald room that is up there. It provides a place for you to go and relax in between visits, watch TV, to take your younger kids to play while you and your spouse trade off seeing your baby, and they provide lots of different food that you can eat while you are up at the hospital. All of it free. It is so very kind and it has helped me on many occasions when I have been up there for hours and starving. We greatly appreciate them!

We did have a couple of minor setbacks but so far they have worked themselves out. He had a higher than normal level of calcium in the first week. The normal level was 10 or lower but he was runinng around 12. We asked for prayers for that number to come down, and over the course of a couple of days it came down to around 9. They were very happy with that number and so were we. :) When they took the IV out, Brant had a few nodules where it was in his leg. We think he must have had a reaction to the IV. Again, we asked for prayers for that and the next day they did not feel any nodules. :) Praise Jesus for that! :) Then he has had one of his liver numbers that has been slowly increasing over the past week. It needs to be under one and it has gone from .9 to 1 to 1.1. They did an ultrasound of his gall bladder and liver and everything looked really good. Also, all of his other liver numbers are great, so it might just be that he is having a higher number due to his premature size. We are praying for that one to go down for good right now! :)

Some folks have asked what the process is for when we go up there to see Brant. We have to be up at the NICU about 15 min or so before his feeding so we have time to scrub in. Sometimes there is a line and you have to wait. So you scrub in up to your elbows for 3 minutes straight...and then you can check in. Once we get inside and go to Brant's bedside, we can take his temp (to make sure it is over 98 degrees before we take him out). Then we change his tiny little diaper (Premie size diapers are too big for him right now-ha!!). And then we are ready to take him out and feed him. We give him the bottle which usually takes between 15-30 min for him to eat..and then we can cuddle with him kangaroo style. :) We strip him down to just a diaper and place him on our chests for some skin to skin contact. He LOVES it and he usually just settles into a deep sleep. It is the most amazing thing..and more relaxing than anything I have ever experienced. I feel like there are some chemicals that are released when you sit with your precious baby that way. I leave feeling like I have had a wonderful massage. :) It is an incredible time with him..and we treasure it so much! :)

So those are the basics of the NICU..and our life up there. we will update the blog as more things change with him..and especially when he gets to come home and we can throw a huge celebratory party!! What a glorious day that will be! :)

Here are a couple of pics to help tell the story... :)
Where we wash up before going in.... Brant's room.....I know that I might be biased but I REALLY think his nursery is cuter at home! :) And it does not have monitors going off all around it at all hours of the day and night! :) The cover over the isolette when he is sleeping... A little sign that one of the volunteers made him. :) The volunteers up there are so incredible!! They also knit them hats, blankets, and all kinds of other fun things. What a wonderful ministry! :) This might show how small our little man is. Look at him compared to Chris's hand and arm. :) Sweet baby boy........We love you Brant!! :)

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