Wednesday, April 15, 2009

Busy Evening

We've had a busy afternoon. This could be long. I apologize in advance.

We decided at 28 weeks that we wanted the NICU doctors to come back in and give us an update. I was a little nervous but this was a MUCH better conversation than the first one. The first one honestly just wasn't good. They were giving us survival rates and chances for developmental problems for a 24 weeker and they weren't very encouraging to say the least. This time things went much better. I'm going to try and summarize the conversation below. The NICU attending that came in was from Egypt. She was very comforting and really seemed to know what she was talking about. Her accent was a little thick so the resident that came with her took some notes for us. Bear with me on the information below...

Also, keep in mind that this stuff is very general and can change from week to week. This info is based on Gaines' current gestational age of 28 weeks.

In four weeks we have gone from a 60% survival rate to an almost 90+% survival rate. I don't remember where we started, but as of 28 weeks there is only a 25-30% chance of a developmental delay. That's encouraging to me because we know that even at 40 weeks, you aren't guaranteed a healthy baby.

They told us that at this hospital they didn't like to put a baby on a ventilator. If possible they prefer to use a CPAP machine. They feel like the ventilator just isn't the best choice for a variety of reasons. They still use them if they have to but they prefer not. The CPAP basically just keeps his lungs a little inflated so that they don't fully collapse (not sure if that's the right word). Basically this just keeps the baby from having to use so much effort to reopen them with each breath. The ventilator in essence breathes for the baby. First of all, they'd have to put a tube in his throat for that and they are harder to wean the baby off of. Also the CPAP machine uses just room air most of the time and not oxygen. Apparently prolonged use of oxygen can cause eye problems?

There is a chance that he could need a blood transfusion at some point if they determine he doesn't have enough iron in his blood. Iron carries oxygen to the brain and other organs but I think babies don't normally have the iron needed until closer to 34 weeks. That about covers the breathing.

There is a valve that goes between the baby's lungs and heart that is open in all babies. In term babies this valve generally closes on its own. In preemies it might not and they treat it with ibuprofen. In rare cases they have to do a procedure to close it but apparently even this is minor.

Brain bleeds are still an issue. Rarely this can be a problem for 40 week babies so its not a concern that we can ever mark off the list until he's here and doing well. They are however less likely at this point. There are four different grades of brain bleeds. The first is not a real concern and really the second isn't either. Third and fourth grade bleeds are the ones that can cause the developmental delays. They will do an ultrasound of Gaines' brain at 3-5 days, 14 days and at 4-6 weeks or right before he goes home. The likelihood of a bleed goes way down after the first few days.

They will insert a PICC line (I think...this or an IV I can't remember) for a short time that will be used to give Gaines nutrients. They will also put a tiny tube down his nose or throat into his stomach that will be used to feed him until he's about 33-34 weeks when he's old enough to start sucking and swallowing.

Right after Gaines is born they will do a blood culture to test for any infection. That will take a few days to get results on so in the mean time he'll be put on antibiotics. If the culture comes back clean, they will discontinue the antibiotics.

All in all they think that he'll be in the NICU until about 1-2 weeks before or after his due date. However, the nurses have told me that in general, it sooner than this. I guess we'll see.

My favorite attending came in tonight. She'd been on vacation for about a week and was glad to see that we were still here. We basically just chatted with her for about 30 minutes. Mostly just conversational stuff but she did reaffirm the other doctor's analysis of my sonogram earlier this week. I did find out that she isn't a regular OB. She is a Maternal Fetal Medicine Specialist which is a little more specialized than an OB...from what I understand. Either way we like her and I think Beau and I feel more at ease whenever we know that she is working.

Tonight they kept me on the monitors a little longer than normal. Gaines' heart rate looked great but they thought they saw a couple of contractions. I didn't feel them but they said that's definitely what they were. There weren't any others so they let me off and just told them to let me know if I felt anything tonight. I think they were from me laughing while I was hooked up but no one seems to buy that explanation. I need to find out if Braxton Hicks contraction show up on the monitor. I know that I feel those from time to time.

I think that's probably about it for today. I'm tired and need to get to bed. I hope I did the NICU info justice and didn't totally butcher it. Please keep us in your prayers. 28 weeks is awesome but 30 plus would be so much better. Please pray that Gaines continues to get stronger and for no infection or labor for me.


The Ellis Family said...

You are exactly right with all of your NICU terms and descriptions! And Kat had all of the same concerns and possibilities, but look how far she's come. You are right though that many of these concerns diminish as he ages gestationally. Glad to see that he's still hanging with you though!

Love to all of you!


Stephanie said...

You did a great job explaining everything!!! Praying for no labor and a restful night!

Daxton's Personal Assistant said...

I'm so happy you guys have made it this far! When my friend went into labor at 28 weeks, I was completely ignorant of the toughness of preemies... I didn't think a 28 -weeker could live! 50 days in the NICU and their baby was home, and a year later is already caught up and absolutely perfect.

My 23-weeker did have to have the PDA ligation for the heart valve, and he recooped fine. Little boys are prone to hernias and he had to have those fixed, too, but Gaines will be at a decreased risk due to his gest age. And plus you've had the steriod shots... Trust me, at this point Gaines will have some obstacles, but he's past that big turning point... You guys have done great!

Still praying in TN!

Jennifer said...

I cannot wait to come back here at 30 weeks and look to the next milestone with you. You are doing awesome! I have to admit, I do get a little nervous if you don't post for a while!

Amy said...

As a NICU nurse, I think you did just wonderful with your explanation! We are still praying in TN for at least a few more infection free weeks for you both! God Bless!

Erica said...

Gaines will be just fine!!! We dealt with all of the "issues" that you just described in your post, and our son, formerly a 2.5# 33-weeker, is now a completely healthy, happy, normal 11-month-old, albeit small for his age. Though it is difficult at the time, you will get past the oxygen, the heart valve that hasn't closed yet, the blood transfusions... and one day you'll look back and wonder, "Did we really go through all that?" God has you and that sweet son of yours so tightly in His hands.

cheryl said...

I'm pretty sure that you have passed on this information with a much better understanding as a lay person/mother to be than "Rochella RN" practiced her bedside manner!

Indocin-Ibuprofin...both start with I's and I'm sure when you are hearing a bunch of stuff that is foreign to you, you snag a few things and forget the rest. It's not like you're going to order and administer these meds for heavens sake!

I'm a L & D nurse and you are doing GREAT! Your fears are substantiated, your questions are appropriate and your understanding is far greater than most expectant mom's. You're a mommy, not a medical expert. That's what your doctors and nurses are there for...they are working for YOU and Gaines! Quiz them when you're ready and be prepared for things to happen quickly when they do start. Praying with you that the Lord will keep him in your womb until he is ready to handle the world!
I've got an extra interest in your situation b/c my daughter is just 5 days behind you in her pregnancy! I will be praying that the Lord will keep him happy in your belly just a little the Lord to care for your tiny guy! I think he'll do fine given the stress he's been under already!
Praying in Chicago!
p.s. Braxton Hick's contractions can definately be seen on a monitor! And THOSE are normal! Just report them if they begin a regular pattern.

JalenasMommy said...

I agree with Cheryl. You are doing a great job Britt!! Don't let someone ignorant like RocheleRn get you down, by the way, I think that person is a troll, I've seen her comment on another blog, and was just as rude and nasty! Hope you dont let that person upset you! Praying for 30+ weeks, and No infection!!! You are doing an AWESOME job!!!

And you were right about the ibuprofen, check out this site,

Have a great day!

Amanda said...

Excellent note taking! You understood things very well. I learned some interesting things as well reading your notes. Our 19 month old 26 weeker had a PDA ligation (to fix the hole between the heart and lungs) and a Grade III Brain Bleed. She still gets Physical Therapy and Speech Therapy (for feeding issues) on regular basis, but she's doing awesome. She was assessed yesterday and they we thrilled to see that she only had a 16% delay in gross motor skills based on her adjusted age. That's not too shabby. Your are very wise to keep in mind that even babies born at 40 weeks aren't guarenteed to be perfectly healthy. Just keep your faith and trust in Him. Glad you have more information and a sense of peace. Fear of the unknown is sometimes worse than what you are afraid of. Waiting until 28 weeks was smart for an update!

April - Team Tottle said...

This all sounds a bit too familiar for me! My daughter Autumn was on the ventilator for 10 days with nitric oxide and then CPAP/oxygen for a while. Born at 29 weeks, her lungs did not develop well at all (worse than expected for her gestational age) but she pulled through by the grace of God and is now 18 months old with no problems except possible asthma!! She had 3 blood transfusions, the first was O- blood from the bank and the next 2 bags were from my brother who matched her blood type of B+. We did what's called "Direct Donor" donations, my mom, dad and brother all donated blood and they held it "reserved" for Autumn. Just wanted to let you know about the direct donor if you would prefer Gaines get relative's blood if he needs any blood at all. I also match my daughter's blood type but they won't let you donate blood soon after birth.

Our pProm and NICU Journey!

The Girls Mommy said...

I'm one of the nurses that took care of Kathryn when she was in the NICU at Brookwood. I have been checking in on you weekly to make sure you are just "hanging out" and not progressing =) You are doing an AWESOME job hanging in there! Gaines is a tough little man as well! Hopefully, you won't get to "meet him" for at least another month, but God is faithful and I will continue to pray for you and your family.