Thursday, April 30, 2009

Off the Ventilator! (New Title)

So, Gaines is officially on CPAP...for now anyway. CPAP supplies continual air to keep his lungs open so they don't collapse but he's breathing on his own, where the ventilator was breathing for him...as I understand it anyway. We went for our afternoon visit and they had just put him on the CPAP. We realize that this might just be his first try. There's a good chance he may not take to it right away. It could take several tries.

For now he seems to be ok on it. He's on 50% oxygen and his sats are doing well. They had to bump up the oxygen level as this is a lesser machine but they will try to wean him as he tolerates it. Right before we left they checked his blood gases and they "weren't bad". I asked what that means and she said, not as bad as they were a few days ago. I'm taking that to mean that they want them to be better but they are not bad enough to put him back on the ventilator right away. Did I mention that he's also off the nitric oxide? Little guy has had a big day.

Oh, the heart echo is not scheduled for today. We think maybe tomorrow. They are on top of it but no one seems super concerned about it at this moment. I'm taking that as a good sign. We would however like to officially rule that little possibility out.

I also wanted to take a minute to mention some visitors we had late yesterday afternoon. Two of the leaders of my company were in DC for some meetings and came by to visit us. I cannot tell you how humbled we are that these very busy men took time out of their day to visit us. Unfortunately Gaines was having a procedure done and they couldn't go back to see him but we had a great visit with them. It was so good to see familiar and friendly faces. Before they left they each prayed for Gaines and our family. I am so blessed to work for a company that is run by such Godly people...I really mean that.

Beau and I have just been blown away the last few days at Gaines' progress. A few times we've wanted to ask, are you sure you've got the right baby? We are amazed at the way God is working in our lives. Please pray that Gaines tolerates the CPAP, for no heart problems and that God prepares us for the possibilities of each of these. Also, Reed is traveling today to stay with Beau's parents for a while. Pray for their safe travels and a smooth transition.

P.S. I got to take his tempeture today and yesterday we touched him a lot...I even got to touch his soft hair.

Love to all,

Brittany

Quick Update (Thursday, April 30)

I called the NICU this morning and Gaines is doing fine. His blood gases are good and his oxygen was currently at 28%. We are about to leave to go visit him. Please pray that his heart echo today is normal. We will update everyone as we know more this afternoon.

Beau

Wednesday, April 29, 2009

Wednesday Evening

We visited Gaines this evening and got quite a surprise...the doctors were getting prepared to move him from the oscillator to a ventilator. We were shocked. The long term plan is to move him from the oscillator to a ventilator, from a ventilator to a CPAP, and from the CPAP to normal breathing. His improvements over the last 36 hours have been nothing short of a miracle. Thirty-six hours ago we would have NEVER guessed he would be moving to the ventilator.

Brittany asked one of the doctors "What brought on the change, why did Gaines all of a sudden start to get better". The doctor didn't say a word...she simply looked up toward the heavens.

I just got off the phone with the NICU. Gaines has been on his machine for 2 hours. He has maintained his sats on the new machine with only 40% oxygen. They have already checked his blood gases and they are measuring fine. His nitric oxide level is stable at level 10. These are all good signs.

Please pray for Gaines, specifically that the heart echo that is scheduled for tomorrow comes back negative for the narrowing of the aorta. Brittany and I can feel the prayers being answered.

Beau

Sorry For The Delay!

I know that it is mid afternoon and this is our first post today. It's been a busy day...a good busy. We visited Gaines this morning and then spent some time with our pastor which was really a blessing. We also had a close friend visit today so between all of that we've just been busy. However, in the middle of all of this, we got a great report on Gaines.

We took our pastor and friend (Golson) up to see Gaines around lunch and ended up talking to an attending doctor (actually the head of the NICU), Dr. Ali. He told us that recently they've had two other babies with the same symptoms that didn't make it. So when Gaines came in and had his first bad night he said "it was a horrible, horrible nightmare". Now that Gaines has made so much progress he said that he is no longer worried about him.

His oxygen was down to 35%, his nitric oxide was down to 10 and they were weaning his oscillator settings some. Dr. Ali actually said that he wanted to extubate Gaines tomorrow or the next day and move him down to the CPAP machine. My mouth about fell open. I wanted to ask if he was sure he had the right baby. He says that its really up to Gaines but the fact that he's moving so much means he wants to try and breath on his own. I'll keep you posted.

As for the heart issue, we talked to the cardiologist this morning. He talked to his partners and they still can't conclude anything from yesterday's test but he did say that there were some reassuring views of his heart. Also, Dr. Ali talked to us about it this morning. I'm almost afraid to believe I heard him correctly but he doesn't seem terribly concerned that there is a problem. As I understand it (and I'm terribly afraid I'm wrong here), Gaines had a problem of needing high oxygen levels and having bad blood gas levels. They thought the cause of this was pulmonary hypertension but nothing they were doing to treat that cause was helping his problem of high oxygen and bad gases. So, they started to look for another cause...his heart, and they ordered the echo. Dr. Ali seems to believe that since they hypertension is getting better, it was the cause of the high oxygen and bad gases (which are now much better)...not this possible heart thing. You can certainly have both but since one cause seems to explain the problem (the heart thing) while not ruled out, is less of a possibility.

Hopefully some of that makes sense. Bottom line is that we feel better about the heart thing...I really wish I could remember the name of it. I know it starts with a C and sounds sort of like cork. They will do another echo tomorrow and we pray that we'll be able to completely rule it out.

We also found out that if Gaines does have this problem, he would not have the surgery right away. It would still be in the near future but they'd wait until he was stronger, bigger and more stable. They'd give him a medicine to keep the PDA open until he was ready for the surgery.

Please continue to keep our family in your prayers. Gaines has made so much progress the last couple of days but he still has a long road ahead of him. Getting off of the oscillator will be so exciting but very scary. Today has been a much better day for me emotionally. Our pastor Jay gave us several important anchors in the Bible to get us through this storm. I really feel like from today on we are going to be ok. We'll have our share of less than stellar news, we'll have low points and we'll have times when we want to scream and cry but we WILL be ok. Below are some pictures from today's visits.

Love to all,

Brittany
This our wonderful pastor, Jay Wolf. One of the nurses told us that when Jay prayed with us at Gaines' bedside, Gaines' sats levels shot up during the prayer.
Beau, with our friend Golson. Golson flew from AL to see us today. He and Beau have been friends for more than 25 years.

Tuesday, April 28, 2009

A Sharp Turn On The Roller Coaster

I've got a lot of info here and I'm probably going to butcher it but please bear with me. We were able to talk to a doctor at our visit this evening. We also talked to a cardiologist. Right now we know that Gaines has pulmonary hypertension and that today it seems to be getting better. Because of his blood gas issues yesterday, they scheduled an echo of his heart today. Even though his blood gases today are better (in the normal range I believe) they went ahead with the echo...which is where the cardiologist comes in.

The cardiologist told us first about two small holes in the lower part of his heart. Obviously they are a concern because they are in his heart but they aren't bothering him...its just something they will watch over time to see if they close (this seems to be common in preemies). The big question mark comes in on a possible narrowing of his aorta (aorta delivers blood to his body). Right now the cardiologist cannot tell if its narrowing or not...he couldn't even give me odds on whether or not he thought one way or the other. It's hard for him to tell because Gaines' PDA (valve that all babies have...full term babies closes on its own...preemies sometimes need meds to close it) is very large and it makes it hard to tell whether or not the aorta is narrowing. Over the next few days as his PDA starts to close and his pulmonary hypertension starts to get better (hopefully) we will discover whether or not his aorta is narrowing.

If the aorta is narrowing, this would mean his body would not be getting adequate blood flow. The cardiologist would give Gaines medicine to keep his PDA open (allowing more blood flow) until surgery could be performed. The surgery would be performed as soon as possible (within a few days from today) at Children's Hospital in DC. Basically, within the next 48-72 hours we should find out if Gaines has to have heart surgery.

When we visited this evening, Gaines' sats looked good and his oxygen was at 40%. The doctors had weaned his nitric oxide down to a level 10 (from 15) and even lowered his oscillator settings. Thankfully, all of these are signs of his pulmonary hypertension getting better. However, as the pulmonary hypertension gets better whether or not his aorta is narrowing becomes more evident. We are very fortunate that they are monitoring this. If they were not aware of the situation and Gaines does have a narrowing aorta he would have all of a sudden gotten VERY sick, VERY quickly. Praise God the doctors are able to be proactive in this situation rather than reactive.

Before we got this report we visited this afternoon. I don't know exactly what it was but I got overwhelmed again. I cried and cried and cried but couldn't make sense of exactly why. I wanted to hold my baby, I miss Reed, I miss home, I miss friends and family, I miss work, I miss my normal life. It gets so overwhelming at times. A little while after I straightened up Beau made me listen to the words of a song he's come across somewhere along the way. Some of you will probably recognize it but it's changed my outlook on things. At least for today but I hope I can keep it in mind on the hard days (which seem to be all of them lately). Really I think its an attitude I'm striving for. I'm posting some of the lyrics below.

Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings
You glory And I know there'll
be days When this life brings me pain
But if that's what it takes to
praise You Jesus, bring the rain.

I am yours regardless of the clouds that may
loom above because you are much greater than
my pain you who made a way for me suffering
your destiny so tell me whats a little rain

Please continue to keep our family in your prayers. Specifically for Gaines' lungs to continue to improve and for no narrowing of his aorta. Pray for comfort and strength for him to keep fighting and comfort and strength for Beau and me to keep going. I cannot put into words how hard it is to deal with all of this away from our support back home and to be away from Reed. I have two sweet boys and I can't be with either of them.

Love to all,

Brittany

Cautiously Optimistic

We just got home from our morning visit. We went a little later this morning because of being up so late last night. I think Beau explained all of that. This morning we got a good report on Gaines' blood gases. They were closer to normal than they had been in a long time. His nurse said they were much better. They also had his oxygen down to about 46% and his sats were holding really well. Because of this they decided to wean his ossilator settings some. This caused his oxygen to have to be bumped back up to about 65% but I think they were expecting to wean that back down as soon as he got used to his new settings.

This is such a relief after yesterday's issues over the blood gases. We didn't get to talk to a doctor, they were all meeting at the time we were there, so we aren't sure if they still plan to nasally intubate him or not.

He was very active while we were there. I think they like him to be more still so the nurse was trying to adjust some cushiony things around him. Right now they don't like to mess with him (which means we don't touch him either) unless they have to. He just does better when he's not agitated. Since she was already messing with him I asked if I could touch him. I got to touch my sweet baby! I put my finger in his open hand and he squeezed it. I hope he knew it was me. Just typing this now brings tears to my eyes.

We are "home" right now having lunch but will head back up around 3. Please pray for another good report and possibly even more progress. I don't want to put too much stock in this but his nurse today actually said that "maybe he's starting to turn they corner". Music to my ears. I'm afraid to get too excited about this report because he is still considered critical and not out of the woods by ANY means but right now we are cautiously optimistic that he's improving...some.

Your prayers are working...PLEASE keep it up.

Love to all,

Brittany

Tuesday Morning Update

We went to see Gaines last night around 8:00. We had planned for it to be a short visit. We were going to stay and get an update, talk to him, say a prayer and then get home to get some rest.

When we got to the NICU they had just measured Gaines' blood gases again and they looked high. The Doctor ordered a retest because the nurse had just suctioned him about five minutes before she took blood to measure the gases. They thought that the suctioning had probably agitated Gaines causing a false reading. We decided to stay.

They let Gaines rest for about 30 minutes and then took another blood gas reading. This second reading was down a little bit, but still high. The doctor ordered a chest x-ray to see if Gaines' "breathing" tube was in the right location. The chest x-ray revealed the tube was too high. The plan was to adjust the breathing tube and then re-intubate nasally in the morning (when an attending doctor was available). The doctors felt his tube was "moving" in part because Gaines is an active little guy. He is constantly moving his little arms and legs. Intubating him nasally would keep the "breathing" tube in place. The doctor told us they would recheck his blood gases around midnight and we were welcome to call and check to make sure they had gone down.

Brittany and I left the hospital around 10:00 and went home. I called around midnight and was told his gases didn't look any better and they were about to switch him from the oscillator to the ventilator. Thinks did not sound like they were going well. The doctor told us to call back in 20 minutes. Brittany and I were getting ready to go back to the hospital. I called the doctor back after 20 minutes of waiting and they had found a large mucus clot in Gaines' tube. They believe this clot was causing the false readings. Praise God!

I called this morning and found out that Gaines blood gases are more normal now, his sats are in the 90's and his oxygen is in the high 60's. He is not on any blood pressure medication anymore. His nitric oxide gas has also been decreased as well. Praise God for tiny miracles.

Brittany and I are going to visit this morning and will post an update later. Please continue to pray for Gaines.

Beau

Monday, April 27, 2009

Huge News!

Gaines' head ultrasound came back normal! Praise God! When we go back tonight we should get more detailed information. Also at our visit this afternoon, we found out that his blood gases are looking better. I know they want his carbon dioxide level to be around 40 and at lunch he was in the 60s...not perfect but better than in the 80s where it was. Please pray that this continues to get better.

His oxygen level was up a little when I got there but I believe they told me it had been down to 65. When he is quiet and still he can hold his sats with less oxygen but whenever he's messed with, he requires a little more help until he settles back down.

In other big news, they fed him today. I asked how he tolerated it an she told me it wasn't enough for him not tolerate it. 1 cc I believe. They are just trying to get his gut (their word not mine) ready...very slowly.

On of our favorite doctors is on tonight and she told me the plan was to try and wean his oxygen down to 60. Once they did that they would cut back on his nitric oxide and and settings on the oscillator. Please pray that he tolerates this. Again, I was reminded...Gaines his a very sick baby. I feel like I get that disclaimer anytime I sound a little bit excited or hopeful at his progress. I know they just want to keep us grounded so I understand. However, I AM going to be excited about this head ultrasound news! That is SUCH a relief.

PLUS, his bilirubin levels are down three points and tomorrow he goes from triple lights to double lights. Not sure the difference but it's better. Right now we can barely see his face because of the mask they have him wearing. Hopefully, once that come off we can post more pictures of his beautiful face.

One other bit of exciting news, our pastor from home is flying up Wednesday to spend some time with us. I know he is a busy man and we are humbled that he is taking time to make such a big trip for us. This is truly a blessing for both Beau and me. We cannot thank the people enough who made this happen.

I'm about to jump into a hot bath to try and relax my leg muscles. They feel like they've been run over by a log truck. Oh, I'm off the ledge now and haven't cried since lunch. We used a gift card that we'd been given for a good sit down lunch and I had a brownie sundae (I shared...some). I felt like I deserved it given my day.

Keep praying!

Love to all,

Brittany

A Total Mess of a Post

Sorry for the delay in posting this morning. I wanted to wait until we visited Gaines and had something to report. When we got here this morning they had just checked his blood gases. They looked really out of whack but the doctor told us that they were adjusting his tube and that should fix it. She said that she didn't really believe the numbers because a baby doesn't usually have that drastic of a change and that they would recheck his gases in a few minutes. When they checked the gases again they were about the same so they decided to do an xray to see where his tube was. I think they are confident that fixing the tube will fix the gases. If not, they will escalate his care. Still, scary to me.

I think this is one of the roller coaster things people are always talking about. I know he is critical but as long as he remains stable I'm ok. Obviously we'd like for him to make progress but after those first 24 hours, stable is a word I'm happy with. Please pray that this is only a tube problem and nothing more.

I got a little upset earlier. This is just SO hard. I know that he is in great hands but it is so hard not to be able to care for your child when he needs it so desperately. I know this sounds crazy but, I was at his bedside looking at him and his hair looked so soft. I so badly wanted to touch it and for some reason I just started to cry. I have a baby that I can't even touch right now (they don't want to over stimulate him). There are no words to explain how hard that is. Put that on top of being away from my other child and everything else I know and it creates a sappy mess.

I'm thankful to be out of the hospital but its also hard. I'm completely lost in a city that isn't my home. PLUS, I am still recovering from having a baby 3 days ago and being on bed rest for 37 days. Everywhere we go here I have to walk and it's tough. The bottoms of my feet are so sore from not having walked on them in so long. My stamina is pretty good but I still get tired easily. This is just a physically and mentally exhausting experience.

I know I just had a pity party for myself and I'm sorry. I feel so guilty whenever I let myself get down. I know that God is going to get us through this. I really do...I trust Him. I just have to keep reminding myself that he's not going to do it according to my timeline or plan. If you can only fit one of us in, pray for Gaines but if you've got a little extra room on your list, I could use a few too.

I am so dang weepy today! I hate not being in control of my emotions and I am not even close today.

Ok...starting fresh...several people have asked about our new mailing address. I certainly don't expect anyone out there to send anything to us but one thing we have learned from this is to let people help. Right now I can't think of anything we need other than your prayers. Anything already sent to the hospital will be put by Gaines bedside. Anything new should go to the new address listed on the side of the blog. The Reese family lives in DC and has offered to be our official mail fairy since we are such vagabonds. Yesterday some one asked us to donate a dollar for the homeless. I wanted to tell him that we were the homeless.

Speaking of walking around here...this is a whole different world for this Alabama girl. We went to this Trader Joe's here yesterday for "groceries". Not quite what I expected. We were able to get the essentials but it stressed me out. I guess Sunday afternoon is a busy time to go but that place was packed. I constantly felt like I was in someones way. Also, I must be really out of date because .1 I took a list and 2. It wasn't on my blackberry.

Also, I've been kind of worried about my clothes. I don't really have much here for warm weather but apparently it doesn't really matter. You don't have to match and its probably better if you don't. Really I think we are just in a kind of trendy part of DC...very nice but lots of cutting edge college folks. I have always maintained that I am cooler than most of the general population (kidding of course) but I don't think I'm even hip enough to live here.

Ok, this is very long and I think I've psyched myself up enough to go back in the NICU. They asked me to leave for the xray and I've been kind of afraid to go back in. Scared of a bad report I guess. Plus I didn't have my act together enough not to cry because they were out of soap or something.

I'm back to being brave. Thanks for "listening" to my blubbering mess. I love you all for your prayers. Please remember Gaines' head ultrasound today. I've been not just praying but begging God for a good result.

Brittany

Sunday, April 26, 2009

Sunday Evening

Brittany and I visited Gaines this evening. He is continuing to hold his sats at 70% oxygen. Everything else is basically the same. His platelet count is measuring a little low. They are going to test it again. If it is low they are going to give him platelets.

Brittany and I went to CVS and a little grocery store this afternoon and stocked up on the essentials...bread, peanut butter, jelly, ham, mustard, and drinks. We are trying to make our place here in DC feel as much like home as possible. We actually ate a home cooked meal tonight for the first time in a while. One of my friends (the same ones doing our laundry) brought us homemade spaghetti and caesar salad. It was so good. I also get to sleep in a real bed tonight for the first time in a little over five weeks (no more chair/bed).

By the way, one bit of very encouraging news. Each time Brittany and I visit Gaines, we say a prayer before we leave. Tonight, Gaines' nurse spoke to us before we left and told us she said a prayer for him at church this morning.

We will visit Gaines again first thing in the morning and update everyone. By the way, Brittany wants me to mention that today is Jack's birthday (our dog) and that Reed made it safely back to Alabama.

Beau

Sunday Afternoon

Brittany and I just left the NICU. Gaines' oxygen is down to 70% and his sats are holding in the low 90's...encouraging. Once his oxygen levels get below 40%, the doctors will begin to wean him off the nitric oxide gas. Once Gaines is off the nitric oxide gas, they will begin to wean him off the oscillator (new breathing machine). We know that this process could take several weeks, but I thought I would just explain the process as they continue to decrease his oxygen.

Brittany may have already mentioned this but Gaines is off one of his blood pressure medicines. He also has another ultrasound scheduled for tomorrow to check for brain bleeds. He has already had one ultrasound with no signs of brain bleeds, but it is standard to check again at 72 hours of age. PLEASE pray that the ultrasound tomorrow is negative for brain bleeds. This has been one of many concerns of ours.

Brittany was discharged this morning and we have temporarily moved into an extended stay hotel that is about 2 blocks from the hospital. We will be at the hotel for at least two weeks. After that we are not sure. We have had a few people in the DC area offer to let us stay with them. We are going to just try to make it through these first two weeks and then figure the rest out. One thing we have learned already, life in the NICU is hour by hour...its pretty hard to plan for something two weeks away.

One person asked if Gaines will be able to be transferred to Alabama at some point. Basically, the answer is no. The NICU doctors will not release or transfer Gaines until he is ready to go home...most likely in 5-12 weeks depending on his progress.

Below is a picture of Gaines and all of his machines. Please continue to pray for our family.

Beau

Bittersweet Day

Just a quick one for now. We called the NICU and Gaines is stable. We are getting ready to go down and see him soon. I need eat breakfast first because I'm still not up to full strength. So after breakfast arrives and a quick shower we'll head down for a hopefully a detailed report. One good thing is that at our 6:00 visit last night, I summarized the doctors report with so, he's still stable...and he said, I think he's doing better. So awesome to hear but now I am bracing myself for a letdown. Please remember, he's still considered critical and has a LOT of help breathing so he still needs tons of prayers...especially for those little lungs. Hopefully I'll have a better report soon.

Oh, I got to change his diaper yesterday afternoon. My mom and I went in and the nurse was just about to do it so she let me. I was so nervous! I guess I did an ok job. I mean first of all he's tiny and so fragile right now but I also had to do it through the isolet arm holes so that made it tough too. At any rate, it felt awesome to be able to do something "normal" for my child.

Today is a bittersweet day. After 39 days here, I'm getting out. I'm so excited to breathe fresh air and feel the sun on my face but I HATE the thought of being away from Gaines. Please pray for our comfort as we walk away from this hospital and our tiny baby.

Love to all,

Brittany

Saturday, April 25, 2009

Saturday Afternoon Gaines Update

Ok...update time. At the time Beau posted this morning we only new that Gaines is doing better. When we got to the NICU we found out that he had a very bad night. At one point his sats and heart rate were both in the 40s and he had to be "mildly" resusitated. From what I can tell, mildly just means that he had to be "bagged" and recieved compressions for about 20 seconds. Either way, not what a mother wants to hear about her one day old. We also learned that he had to have a blood transfusion in the night because his blood was low. One of the causes of this low blood could have been a brain bleed.

The silver lining to that cloud was that since about 6 or 8 this morning (I got conflicting reports on the time) he has been stable.

He looked great when we visited this morning early and he still looked good when I took my parents and Abby to see him around lunch. The doctors where in a meeting the second time so I didn't get any info then.

His doctor just came in here a few minutes ago with the latest report. Right now Gaines seems to be doing some better. He has stayed stable and they are now trying to wean him down on his oxygen. He's down to 85% oxygen and his sats are staying in the 90s. They are also weaning his nitric oxide. They did a sonogram to check about the brain bleed and right now it is negative. This is huge because brain bleeds can cause bad developmental problems. They'll do another one in a few days to make sure nothing showed up. If he makes it 72 hours from his birth without one, the chances are less than one percent of him having one. Also, all of his inside organs looked good.

Now, keep in mind that despite all these positive reports, Gaines is still critical...more critical than most 29 weekers would be considered (probably because of his lack of fluid). The doctor reminded me that he is on every machine they have right now. He still needs lots of prayers. Please pray for his little lungs and for strength for him to keep on fighting.

Beau and I are having a much better day. Thank you for your prayers.

Brittany

Day 38 at GW, Day 2 for Gaines

After Brittany posted last night we got some scary news. We went to the NICU to say goodnight to Gaines and we were told he was in critical condition. The doctors had hooked him up to the new machine and his SATS were great but there was too much CO2 in his blood. The doctors were about to give him a new drug to help with this situation. They told us that if the drug didn't work there was one other they could try. Brittany and I stayed in the NICU for a short time and prayed with Gaines. The doctor told us to go back and get some sleep (we had slept 3 hours in the alst 48) and that they would come to our room if things didn't start to get better.

Brittany and I came back to the room, prayed, and fell alseep. Praise God, we just woke up and realized no one from the NICU ever came by during the middle of the night. Both of us confessed that we both woke up thoughout the night and looked at the clock thinking "Well, it is 2:00 AM and no one has come by yet". We just called the NICU and Gaines SATS are good and the gas in his blood is better.

When Gaines was born, Brittany and I both knew there would be good days and bad. I guess we didn't realize there would be so many ups and downs every hour and every minute. Just in Gaines first day we were told he looked good as he left the delivery room and didn't have to have any help breathing. About an hour later we found out he was on a ventilator but everything else looked good. Then we found out the amount of oxygen he was being given had been reduced from 100% to 50%. I think at this point Brittany and I got a false sense of security that Gaines was going to continue to go in the right direction. Later last night we were told his SATS had dropped considerably even though he was back to 100% oxygen. The doctor explained that with little oxygen in his blood, eventually his little heart would tire and just stop. Fortunately, the doctors administered the Nitric Oxide gas and his SATS came back up while we waited on the new machine. Again, we thought he was going in the right direction. And as you already know, when Brittany and I went to say good night to him last night, we were told about the CO2 in his blood. What a first Day.

I guess you can never really be prepared for life in the NICU. No matter how many people tell you their story or experience in the NICU, it just doesn't prepare you for the unbelievable emotions you experience.

Please continue to pray that for Gaines health.

Beau

Friday, April 24, 2009

Phase Two

It seems that we are now in the second phase of this adventure God has put us on...the NICU phase.

The big news is that Gaines seems to be stabilized right now. I just spoke with one of the doctors in the NICU and they are currently switching him to his new machine. This new machine will be less stressful on Gaines than the ventilator. Pray that he takes to it well.

Praise the Lord, his oxygen saturation levels are back to where they needed to be after being given breathing treatments (nitric oxide I believe). Before we left the NICU this afternoon they had gone from low 50s to mid-upper 80s. The doctor I just spoke to said that he had been holding steady at 90. For a baby Gaines' size 88-90 is what they shoot for. However, she very quickly reminded me that he is still critical so please continue to keep Gaines (specifically his lungs) in your prayers. The first 24-48 hours of his life are so crucial.

What a long two days it has been. We started Thursday morning around 4 am with my contractions. After a few hours of that, they tapered off and I had a pretty normal day...just very on edge and very stressed at each twinge of my body. That afternoon around 4 I started having the contractions again. Needless to say they were very painful and we got very little sleep that night. I also had doctors constantly monitoring me and trying to decide if I was going into active labor.

After a dose of morphine and some other medicine that I can't remember, we were able to rest for about an hour. At 4 am this (Friday) morning they finally checked me to find that I was 3 cm dilated. So, off to the labor and delivery room we went. I had been in pretty severe pain since 4 that afternoon so after begging for and getting my epidural we were finally able to rest...for about an hour. Pretty quickly after that, my doctor checked me and I was fully dilated. About 2 minutes later there were about 12 people in my room and 2 minutes after that Gaines was here. I have truly been blessed to have had awesome doctors and nurses here. They have all been incredible.

Gaines came out crying and looked bigger than we expected. Later we were happy to find out he was 3 lbs 2 oz. It was so scary watching the NICU team work on and stabilize my baby. At the time they took him away they didn't think he needed to be on the ventilator but they realized soon after that he actually did. His little lungs are just very immature. Less than what you'd expect of a 29 weeker because of the lack of fluid.

The rest of the day has kind of been a blur. I moved rooms, showered, visited Gaines, my parents and Reed arrived and I had several housekeeping things to take care of (consent forms etc). When the NICU doctor came down here to talk to us our hearts dropped...the news was not good. Gaines had seemed so stable at my visit this afternoon. Beau and I were terrified. We went to the NICU and watched the machines. It was a bleak situation. A nurse asked if we wanted a clergy person to come up and baptize Gaines. That's when I really realized that they didn't think he would make it through. BUT, slowly but surely the numbers on the machines changed and he stabilized.

After we felt comfortable leaving we came back to my room to rest. My body is so sore from having contractions for so long, an epidural put in, labor in general, the emotional roller coaster of today and stress for about 37 days. I hadn't been able to eat or drink since 4 Thursday afternoon and my body felt like it had been hit by a truck. I did more today than I have in 37 days so you can imagine how weak I am.

Beau and I are resting right now, he's actually sleeping. We are headed back to the NICU at 9 to check on tell Gaines goodnight. I pray that everything is alright when we get down there. He really is a precious boy. He's opened his eyes for us a few times...especially when we talk to him. We've also been able to touch his little feet. We are already so impressed and thankful for the NICU staff here.

We knew that the NICU would be a roller coaster but this started off with more of a bang than we were expecting. I just don't think you can ever prepare yourself for what it actually is. We are going to have a rough time for the next several weeks. When you pray for Gaines, pray for comfort, peace and strength for Beau and me as well. This is SO hard but I know we will get through this. There is a reason God is putting us through this trial.

One last thing. We haven't gotten to see Reed as much as we'd like today but he is so precious and was a major bright spot in the day. He has learned so much the last two weeks and was a breath of fresh air in this room today. God has already blessed me with such a sweet and loving child...albeit rambunctious. I feel truly blessed to now be the mother of two little boys and I can't wait for them to grow up together. Please continue to keep our family in your prayers. We wouldn't be getting through this without them.

PS. I just heard from a NICU doctor that Gaines is on his new machine and is doing ok (they never say doing well I've noticed...it's always ok). His sats are up to 93 and he is down from 100% to 80% oxygen. They are doing another chest x-ray so they want us to wait until 9:30 to go down. Hopefully it will be a peaceful visit that helps us get a good night's sleep. One last thing...one of Gaines lungs had been working harder than the other. You could actually see it when he breathed but that has straightened itself out as well. Thank you all for your prayers today...Beau and I are truly humbled by every one's support.

Love to all,

Brittany

We need emergency prayers

We need emergency prayers for Gaines. He is not doing very well on the ventilator and the doctors have decided to switch him to another machine. The hospital is having to get this machine brought in. He should be hooked up to the new machine in about an hour. Hopefully this will correct the problem but please pray for his under developed lungs.

Beau

Pictures of Gaines

These pictures were taken when Gaines was about 3 hours old.





Specific Prayer Requests

We just met with one of the NICU doctors. Gaines weighs 3 lbs 2 oz which is awesome. It is still very early and we don't know much. The NICU team is currently running several tests. We'll know more from those later.

At this time, we do know that he is on a ventilator because his lungs are still immature...even a little immature for a 29 weeker. We were told this is probably due to the lack of fluid for him to "practice" with. They are giving him surfactant which is something term babies already make. This will help to keep his lungs open. Please specifically pray for Gaines lungs to develop and for other tests to come back normal.

I so much want a healthy baby. We should be able to see him in about 30 minutes.

Brittany

Thomas Gaines Daniel

Thomas Gaines Daniel was born at 9:35 AM Eastern. He came out crying and his color looked good. He has a lot of black hair. We don't know anymore at this time...he is with the NICU team. We will post an update once we have more information from the NICU team regarding Gaines. Brittany is doing fine.

Prayers are needed again

It is wierd to be writing this knowing that by the time most of you read it I will be a father for the second time.

Brittany began experiencing contractions again last night around 5:00 PM. They continued through the night intensifying and becoming more frequent. The doctors did everything they could to possibly slow down the contractions; however, at around 4:00 AM they decided to move her into a delivery room because she was already 3 centimeters dilated. Gaines will be born today, April 24th.

Praise God that Brittany held on to Gaines for 37 days after her water broke. She was admitted at 24 weeks 1 day and will give birth at 29 weeks 3 days.

Please pray for a healthy and safe delivery for Gaines and Brittany. The second part of this journey is about to begin.

Beau

Thursday, April 23, 2009

Update from Brittany

Hello all. Beau's done most of the posting today because I am trying to be as still as possible. We were so calm this morning but after I got off the monitor I didn't want to do anything that could start the contractions again. Plus I was super tired. I didn't sleep well and woke up fully at 4:30 this morning. I took a good nap and now I feel a lot better.

The contractions are pretty much gone. I still have one every now and then but nothing consistent. I pray that they hold off. They just checked Gaines' heart rate again and at first it was pretty high. A high heart rate is a sign of infection. So, they left me on the monitor for a little while longer and he settled back down. From what I understand, its fine for spikes to be in the 160s and 170s, but they don't want his baseline heart rate that high. The spikes are actually good because the show that his nervous system is developing. He ended up with a baseline about 140-150 I think. I hope that makes sense.

I honestly thought this morning that Gaines was coming today. He still could of course but it doesn't seem as imminent. I kept thinking...I'm not at 30 weeks yet...I want to make it to 30 weeks. Funny how 36 days ago I would have been happy with 25 weeks and now 29 doesn't seem good enough.

Oh, my temp and blood pressure were also ok so that's comforting.

Please continue to keep our family in your prayers. Pray against infection and labor, pray for a healthy Gaines no matter what, pray for comfort, strength and peace for Beau and me and pray for safe travels for my family and Reed tomorrow. He's flying and that always makes me nervous but I am SO looking forward to seeing that little face tomorrow!

We are so thankful for all of your prayers today and always. I'm going to run for now I still want to be a still as possible.

Love to all,

Brittany

Contraction Update #2

The nurses came in around Noon and took Brittany's temperature. It was below normal...wonderful news. They also monitored Gaines' heart rate. It was not elevated...also good news. Over the past 2.5 hours Brittany has only felt a couple of contractions. We will keeep everyone updated.

Contraction Update

Brittany's contractions have slowed and eased. The doctors have taken her off the monitor. The contractions Brittany experienced this morning could be the early signs of her body letting us know that an infection is setting in. However, with no other definite signs of infection, the doctors are going to closely monitor the situation. They do not feel there is any reason to perform a c-section at this time. The doctors did check Brittany's white blood cell count this morning and it had risen to 12. While this is a increase from the 10.78 on Monday, the doctors are not overly concerned by this.

They are going to monitor Gaines' heart rate at 2:00 this afternoon (normally they only do this twice per day). If Gaines has an elevated heart rate, that would be another indicator of possible infection. The doctors are also going to measure Brittany's white blood cell count once per day rather than once per week.

The contractions Brittany experienced this morning could be nothing or it could be a sign of more to come. The peace and calm Brittany and I felt this morning are because of God's presence and your prayers. Only God knows what today holds for us. We continue to ask for your prayers...specifically for peace, comfort, a healthy Gaines and that His will be done.

Beau

We need your prayers...

Brittany woke up this morning at 5:00 with pain in her lower back and general discomfort. The doctors have confirmed that she is having contractions. The contractions are approximately 2-3 minutes apart. Right now the doctors are monitoring the situation and giving Brittany fluids via an IV. The fluids could stop the contractions. If the contractions intensify and stay at regular intervals, the doctors will check to see if Brittany is dilated. The doctors do not want to have to do this as it is a great way to introduce infection. Some good news, the doctors did a sonogram this morning and Gaines' head is down.

Brittany is still in the same room...she will be moved to a delivery room if things progress. If the contractions stop, this "episode" is not an indication she would be giving birth any time soon. If the contractions stop we basically go back to just waiting again. She and I both are surprisingly calm and in good spirits. We know that God is in control of everything.

Please pray that the contractions stop or for Gaines to be delivered healthy.

Wednesday, April 22, 2009

Various Ramblings...

It's another afternoon here and things are still going well. Gaines' heart rate continues to look good and I still don't have any signs of infection. It's just been another looooong day here. We really are so thankful for each day that God gives us here but we also miss home very much. I know that we'll be there again when all of this is over but we so miss our "real lives". We are so blessed to have a wonderful son, a great dog, jobs we love, friends we miss and a house that we look forward to getting our family back to. Its just hard to have all of that taken away from you for a while.

The last time they let me "out" for my sonogram I was reminded that in the great scheme of things we don't have it so bad. I saw other patients being pushed around and realized that things could be much worse. That said, with the days getting longer around here, the missing home gets worse. Most of the day we are fine but there are a few times a day when you just want "normal" back. I feel so guilty actually putting that into words because I know what a gift the last 5 weeks have been. I almost feel like God will think I'm ungrateful if I don't stay super positive about everything. That couldn't be further from the truth...we are truly grateful. Gaines would have been here 5 weeks ago if it wasn't for God and all of your prayers...I know that and I thank Him everyday for it.

My mom just called and Reed's 18 month checkup went great. He's perfectly healthy and the doctor said that he is one of the most "well adjusted 18 months old he's seen". Not super sure what that means but I'm sure it's because of the way I've raised him. :)

I almost forgot, Beau was given a new job today here at the hospital...well volunteer job. Our favorite attending came in this morning and asked him to compile all of the resources he had come across in our search for housing, food, organizations etc. It really could not have come at a better time for him. I know he misses his job and this will give him something to work on. I think he was pretty flattered that they asked him to do it. Apparently people stranded away from home are not uncommon here-I guess with this being a big city and a city that draws a lot of tourists. They just don't have any compiled resources for people in our situation or people who have family in town for extended periods.

I guess that's it for now. Please continue to keep our family in your prayers.

Brittany

Wednesday Morning, April 22

It is hard to believe that April is almost over. It is such a weird feeling to know that we will have spent the entire month of April here at GW Hospital. Although we are extremely appreciative to be here, it is strange to see an entire month go by. I know Brittany and I miss Reed, our friends, family, jobs, Jack and everything else back home. If I have done the math correctly, we will be bringing Gaines back home sometime in June, possibly July.

Brittany is still sleeping. For those of you who know her, this probably comes as no surprise. Everything still looks good regarding Gaines. It is amazing to think that the doctors originally told us that they really wanted Brittany to go 48 hours, 7-10 days would be really good, and that 4 weeks would be the best case scenario. As of today, Brittany has been at GW for 5 weeks. I pray that she and Gaines continue to prove the doctors wrong for a very long time.

Beau

Tuesday, April 21, 2009

29 Weeks-Afternoon Edition

I don't have much of an update this afternoon. Things here are still going well. Gaines is staying put and I still don't have any signs of infection. I know Beau explained the WBC count this morning. That explanation from the doctor last night made me feel much better. I must have freaked out about it a little more than I realized because I've had three nurses and three doctors come in here to talk to me about it. I really didn't mean to cause such a stink over it but all of their reassurances has made me feel a lot better about it. Really, I was already over it before the first doctor ever came in last night, but that's ok.

We had a visitor from Montgomery today. Someone I work with was up here for other reasons and came by. That was a nice distraction for a while. I feel like we talk any visitors we get to death. Other than ourselves and our poor nurses and doctors we don't have anyone but each other to talk to. Our favorite attending just came in a few minutes ago. I let her off easy this time, but last time I asked about her vacation, her education and basically her whole life.

The days here are getting longer but I'm thankful for every one of them. I know that we are in such a better place now than we were five weeks ago. If we make it to 34 weeks we are now halfway there. Tomorrow it will be all downhill. It could be sooner but in no more than 5 weeks, Gaines will be here and phase two of this adventure will start.

One more thing and I'll go. I found out that little boys have a harder time and take longer to get out of the NICU than little girls do. I'd pretty much known that all along but a nurse finally confirmed it for me yesterday. We were talking about something related and I just asked her. She hesitated before she answered but I appreciate her honesty. Knowing that will help me from getting discouraged if things take a little longer. Please keep praying for a healthy Gaines.

Ok...that's it for now. Hope you all have a great afternoon.

Brittany

29 Weeks

Unbelievable...Britt is now 29 weeks along. She was admitted at 24 weeks 1 day. What an amazing God we have.

Gaines' heart rate monitoring was great last night. He continues to prove that he is a little fighter. Many times the nurses have a hard time keeping him on the monitor because he is so active and moving around so much. Brittany and I have been hoping that Reed was going to be our "busy" child. I am afraid that Gaines may take that title.

One of the doctors came in our room last night and reassured us regarding Britt's white blood cell count. The doctor explained that a pregnant woman's wbc count is high anyway. A normal blood cell count does top at 10.8 on the scale; however, the doctor told us that a pregnant woman's can be normal at 14 or even 18. He informed us that they are more closely monitoring any significant jump in Brit's white blood cell count and not necessarily looking at the number. This is good news. Even though Britt's last count was 10.78, her wbc has not fluctuated enough for the docotors to be concerned at all.

We are only seven days away from the next goal of 30 weeks.

Beau

Monday, April 20, 2009

So close to 29 weeks...

It's Monday again. We actually like Monday's because we are kind of back to normal. There is better tv on during the day and it just seems more normal. We were able to watch the University of Alabama A-day game on ESPN on Saturday so that was kind of nice. Although a scrimmage isn't quite as exciting as a real game. Beau found out that 45,000 people attended Auburn's A-day game and was kind of impressed at the turnout. I told him it's because Auburn fans wanted to go to a game that Auburn actually won. Kidding...Auburn fans please keep praying for us. :)

I do have a specific prayer request. I'm not supposed to be worried about this (per my nurse and Beau) and I'm not too worried about it but adding it to my laundry list of requests can't hurt. My white blood cell count came back today at 10.78. The normal range is 4-10.8. So...I'm just on the cusp of normal...white blood cell wise. My other readings have all been around 9-10ish but this is the highest one yet. According to my nurse they fluctuate and this number isn't concerning because it was such a slight change from my 9.9 last week. She says they would be looking for more of a drastic change like 14 or 15. I just wanted to ask that you pray that this isn't the start of an infection. I've asked them to check me again on Thursday so we'll see. Thankfully, I don't have any other signs of infection at the moment. Please pray that this continues.

A few people have asked about Reed and Jack so I'll update on them. Reed is with my parents right now and will be flying back up on Friday to see us again. Please pray for their safe travels. Most of my family lives in the same town so he is also getting to spend a lot of time with my grandparents and aunts and uncles. Today he is with my aunt and grandmama and they say that he's doing great. My grandmama was just telling me that he helped her plant flowers last week. She also taught him last week to ride a broom like a horse. We'll have to get him one of those horse heads on a stick...let me know if any of you know where to find one.

My mom told me that yesterday they had their Roomba (vacuum cleaner that just roams around) going and that it trapped Reed in a corner and that he about jumped out of his skin. Poor boy. I hate it for him but I bet it was hilarious.

Every time he is here Beau and I notice all his new words and tricks. He repeats almost anything now and he just does so much funny stuff. We can't wait to see him again. We are SO blessed to have families that we can trust to take care of him and to bring him up here so often. Not having to worry about him makes this so much easier.

My parents have also taken in our first child, Jack. I think Jack is having a harder time adjusting than Reed is. God has given us such a peace about being away from Reed but I still worry about Jack. I know...he's a dog...but he's my dog that I've loved for almost five years now and it's hard to be away from him too. I guess I feel like Reed is so young that he doesn't even really miss us but I know that Jack does. He's very sensitive. That sounds crazy but he really is. Any non-dog lover can just roll their eyes...I don't care.

I guess that's about it for now. Gaines' heart rate looked good this morning and everything continues to go well. Please pray that it continues and pray for Gaines to keep developing into a healthy baby. Thank you all for your continued prayers.

Brittany

Monday Morning

Good morning everyone. Brittany has made it to 28 weeks, 6 days. We have been in GW Hospital for 33 days. Britt is doing fine and so is Gaines.

Thank goodness it is Monday. The hospital gets so quiet on the weekends. We have a hard time remembering what day of the week it is but we can always tell you if it is a weekday or a weekend. We tend to get bored on the weekends. There are fewer nurses, fewer doctors, fewer patients and less commotion in the hospital on the weekend. This past weekend, we played a lot of Uno. Brittany is winning...by a lot.

We have received a couple of questions about our dog Jack and other son Reed. Brittany will update everyone on them later today. She is about to get on the monitor so the nurses can monitor Gaines' heart rate. Thank you for prayers...miracles are happening every day.

Beau

Sunday, April 19, 2009

Sunday Evening Commentary

Sunday afternoon and not much to report. We are still here and Gaines and I are still together...thankfully. His heart rate tracing looked great again this morning. I think they are looking better and better. I'm not an expert on it but everyone around here seems to be describing them more favorably. For a while it was, "Well that's what you'd expect of a 24 weeker" or "It's what you'd expect from someone with broken water". Lately it's been "It looks beautiful" or great, excellent, whatever...you get the drift.

I'm in better spirits today. I wasn't in bad spirits yesterday...just one of those days when every so often you get nervous/scared/worried etc. Last night when I was saying my prayers before bed, I had barely started thanking God for giving us another day when tears started rolling out of my eyes. I didn't even really know why. I've only cried maybe 4 times since I've been here so it was weird. I think I just finally let myself think about what happens when Gaines actually gets here. For the last 32 days I haven't let my mind go there. The unknown is very scary to me. Enough of that...I just wanted the record to show that I am back to having a positive attitude.

I had three doctors that came in this morning but one was actually an attending so I asked her a question that had been nagging at me since last night. One of the functions of the fluid is for a baby to practice breathing before they are born. I asked how having no fluid was affecting Gaines' lung development. She told me that he doesn't have no fluid; he has 4.5 whatever they use to measure (it should be closer to about 16 if I was unruptured). Since he has some it shouldn't be a concern. Apparently, he doesn't need a lot for his little self to practice. It was such a relief to hear that. She explained that if they did a sonogram and it showed up that he had no fluid they would put me on stricter bed rest (no bathroom and no showers) and hook me up to fluids in an attempt to build it up.

Our favorite attending came in a few nights ago and I had her explain the hierarchy around here again. I pretty much understood it but I wanted to know who constitutes a "real doctor". I confessed that at this point I always questioned anything that anyone other than an attending told me. I don't mean to sound so untrustworthy but this is my very early baby we are talking about. I might take their word on a cold or something (actually knowing me even that's questionable) but not this. Bottom line, I still don't know who is a "real doctor" and who isn't. All I really got out of it is that different levels have different levels of responsibilities. My real reason for asking is because I wanted to know which level person would be delivering Gaines. The good news is that an attending has to be in the room. I won't go into all the details of it but basically they are right there.

I guess that's about it. I know not everyone cares about my questions concerning the doctor hierarchy and various other rants but I think my family and close friends do...and if they don't they better start. Anyway, I just try and explain all of this as I learn about it.

A quick Uno update before I go...We have decided to keep one big game going while we are here. I am ahead by 204 points. Not that I'm keeping track but if we were playing to 500 like we should, I would have already won...by a lot.

Hope you all had a great weekend.

Brittany

28 weeks 5 days

Brittany and I actually got to sleep a little late this morning. We are continuing our game of Uno while we wait for her breakfast. We have played two hands already and I won both...although I only gained a total of 22 points.

Brittany is feeling fine and Gaines will be monitored later this morning. We have been here for 32 days, please continue to pray for more.

Beau

Saturday, April 18, 2009

Borrowed Time...

Beau is out for a little while so I thought I'd post a blog about, well nothing really. Everything medically is still the same and going well. I just have the feeling lately that we are on borrowed time. I know I shouldn't, but we have just been SO blessed to have been given 31 days since this ordeal started, that I wonder when we've reached our limit. I go long stretches of time without thinking about it but every so often it pops in my brain.

I can't really explain it. I feel a big sense of relief from having made it to 28 weeks but I still know that an early birth and a very preemie baby is looming. Even if we make it to 34 weeks, that's still 6 weeks early. I've let a little fear creep in wondering if Gaines' lungs will be able to handle it out here. The odds are so much better than they were but there are no guarantees. If Beau were here right now he'd tell me there are no guarantees in anything...even having a healthy baby at 40 weeks. Of course I know that...it's just scary not knowing what's going on with your baby.

I'm sorry to be kind of a downer right now but I just read an update on a girl I've been following with the same circumstances (broken water) only she was having twins. She delivered at 32 weeks and its not good for one of her babies.

I'm going to take it as a reminder that all of this is in God's hands, as it always has been. Please continue to keep us in your prayers. Please pray specifically for Gaines to continue developing, no infection or labor for me and for continued comfort and strength for Beau and me. We've had a good day so far...I pray that they continue and we have a healthy baby in 5 weeks and 3 days.

On a much lighter note, Beau and I are currently engaged in a rousing game of Uno. We are on a break right now but at this point I'm beating him 349 to 141. I'll let you know how it turns out.

Oh, and someone drank my chocolate Ensure last night. I had it in the fridge to get it cold (they send it up here hot) and someone drank it. So, I had to drink a strawberry one and it wasn't so good. Also it was warm and poured over ice. Gag.

I'll get off of here now before I keep rambling. I hope you are all having a great weekend.

Love to all,

Brittany

Still here...

Today is day 31. I am 28 weeks and 4 days pregnant. Ten days until I hit the new goal of 30 weeks.

There isn't much to report this morning. They let you sleep in around here on Saturdays. It is so nice. My doctor this morning said Gaines' heart tracing last night looked great. Hopefully this morning's will go just as well. I am still showing no signs of infection. I forgot to mention that my white blood cell count this week came back fine. So...we are just praying for more of the same today.

It hit us last night that if I make it to 34 weeks, this Tuesday will be the halfway mark. Kind of exciting I guess. It's weird to think that we'll have a new baby in about 5 weeks or less. Not quite like I planned it.

More later this afternoon. I let myself eat pancakes on the weekend and they are here. They won't be any good cold.

Love to all and please keep praying.

Brittany

Friday, April 17, 2009

Day 30

Just a quick post to let everyone know that Brittany is doing fine. She took a nap this afternoon. The nurses should monitor Gaines' heart rate again later tonight. We will post again later tonight if there is any news to report. If everything is normal tonight, we will post in the morning.

Beau
Good Morning. Just a quick post for now. Everything is still going well here. Last night's monitoring went great...good heartbeat, no contractions. I still am not showing any signs of infection...Praise the Lord. I was just thinking this morning about how blessed we are and how each of the 30 days we've been here have been a blessing.

My nurse last night was my nurse from my first night here. We actually have her every night that she is working. Anyway, she told me last night that other than the contractions that showed up Wednesday night, my contraction line had always been flat...except for my first night here. She said that I wasn't feeling them on that first night but that they were definitely there. She told me that was normal because when your water breaks, your body starts producing oxytocin which causes contractions. It would have been so easy for me to have gone into full labor that night but I believe that because of all the prayers that started going up that night, they stopped. I'll never know for sure and that could just be a normal thing but that's the way I'm going to look at it.

I had a couple of questions in the comments from the last post that I'm going to try and answer. I think several people probably wonder about this. Remember...I'm not a doctor so bear with me. Someone asked how Gaines can keep developing with no water around him. The lack of water doesn't keep him from developing. The amniotic fluid (water) has 3 main functions. I'm sure there are more but these are the three I know about. First, it is to give the baby something to move around in. You want him to keep moving so that he doesn't develop problems with moving his limbs. So far, this baby has no problems moving around. Second, the fluid is there for the baby to "breathe". It gives his lungs practice breathing. I'm not exactly sure on this one but I believe that since I still have some fluid he's still able to get some practice in. The thing about the fluid is that the baby is constantly making more. Basically, he gets nutrients from the placenta and uses the bathroom (just like we do) and the urine is the amniotic fluid. So, he's constantly making more...but I'm still losing it. While it is possible to re-seal, that hasn't been the case for me and is apparently pretty rare. Third, the fluid is there to float the umbilical cord. This keeps the baby from "stepping on his cord". Whenever he does, it causes his heart rate to decrease until he figures out what he's done and gets off of it. As long as he keeps getting off the cord, things are okay.

The last question was, if I'm able to make it past 34 weeks, why won't they let me? At that point, the risk of letting me go longer outweighs the risk of having a 6 week premature baby. Because an infection can be so bad for the baby, it just makes more sense for him to be here at that point.

Okay...I think that about covers it for this morning. I'm going to quit calling these things quick...they never are. I hope you all have a great day. Please keep us in your prayers.

Brittany

Thursday, April 16, 2009

Quick Hello...

Good Morning. Let's be honest about this title...are my posts ever quick?

Beau is out dropping off our laundry with our laundry fairy (thanks Elizabeth!) so I thought I'd post a little update. I guess I don't have too much to say but I don't have too much to do either so just humor me.

Big news here today. Beau tell me that they are painting the walls in the hallway. I expect to see the small section I can see painted in the next two days. That will be exciting. The paint color is Grape Mist. I haven't seen it yet but its got to be better than Institution Gray. I've asked my nurses if I can get an accent wall. I'm not holding my breath.

So far its been a good day. My monitoring went well. Gaines looks great and it didn't show any contractions. Still no signs of infection either. I have to confess that little contraction bit made me a little nervous last night. Any time the doctors are relying on me to tell them if my body's doing something weird I get a little panicky. I just start to be ultra sensitive about any little thing I feel and I obsess over trying to figure out if its something I should report, or if its just a regular part of pregnancy. I'm also very wary of telling them that somethings going on. I have a fear that it's really nothing but now that I've told them, they'll rush me off and take my baby before they really had to. Maybe all that makes sense. That's why I have several times asked for prayers that I'll know when something is wrong.

One thing I forgot to mention yesterday is that I will be able to briefly see Gaines after he's born (as long as there are no major issues). I was afraid they'd just take him off without me even getting a glimpse of him. Hopefully all will go smoothly and I'll at least get a look at him.

Also, several people asked me after one of my recent posts what the five questions are that they always ask me. Basically it goes like this:
Any bleeding?
Any cramping?
Any contractions?
Still leaking fluid?
Baby moving ok?
I keep telling them. If any of these things are happening, they will know before they can come in here and ask me each morning.

On the NICU post I did last night. I tried to just give a brief summary of everything we learned. It was in no way comprehensive...that was a lot of info to take in and I am not a doctor or nurse. I do feel like this hospital is very cutting edge in the way they do things so some of it could be very different than what other people have experienced. We choose to trust our doctors here but will not hesitate to question something that we are uncomfortable with. Anyone that knows me knows that.

One last thing. Beau and I are handling this situation the best way we know how and in a manner that we think is best for us. Please bear with us and support us unconditionally. Even people who have been through this before all have different experiences. There may be times when we use this blog to vent, air frustrations and articulate our fears. I never want to sound like I'm complaining about our experience because God has truly blessed us over the last 4 weeks, but there are times that this is very hard and life's petty frustrations are still there. We aren't perfect and there are certainly times when we aren't strong. During these times we still need your support, prayers and positive feedback.

Oh...I had a shower today and was able to dry off with a fluffy yellow towel! It was so nice. Thank you Until Journey's End!

I hope you all have a great day. Please keep praying for us. God is working a miracle in our lives because of your prayers. Only 12 more days until I hit 30 weeks!

Love to all,

Brittany

Day 29 (28 weeks, 2 days)

Brittany is doing fine this morning...the nurses have not monitored Gaines' heart rate yet. Brittany and I met with the NICU the Doctors last night. Brittany posted a very detailed post last night regarding this meeting. Please read the post below (Busy Evening) if you would like to know what the NICU doctors had to say.

Beau

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.

Pictures

A few people have asked to see pictures of Reed at the Easter Egg Roll. Below are a few pictures of him and a picture of Beau's friends that visited us on his birthday.

Reed and Beau at The White House

He was too small to actually "roll" the eggs


Reed and Pop (Brittany's Dad)

Beau's Friends

Day 28 (28 weeks, 1 day)

Yesterday was a great day. We got the official report regarding the sonogram and as Brittany already mentioned, the doctors said it was "very encouraging". We also found out last night that Brittany passed her gestational diabetes test. I know she is happy, she can continue to eat all of the sweets that you guys have sent us. I don't know what she would do if she didn't have a dessert after lunch and dinner.

I think Brittany mentioned in her post that five of my close friends from home visited us yesterday for my Birthday. Four of them flew in from Birmingham, AL and one flew in from Dallas, TX. They all flew out last night. They were only here for about 5 hours. They took me to lunch to a place close to the hospital and then we came back to the room. Brittany had somehow managed to get cupcakes to our room without me knowing so we all had a cupcake. We then just sat around the room and caught up with each other. Brittany and I smiled and laughed more in the five hours those guys were here than we have in the last month. It was such a blessing that those guys would take a day out of their life and fly to DC to spend a couple of hours with us. They are amazing friends and I will never be able to fully explain the impact their short visit had on Brittany and me. For a short time we were able to forget why we were here and how long we had been here. I can't thank them enough.

I also can't thank my wife enough. Brittany is on "bed rest" (not bedridden) and was able to make my 30th Birthday so special. Much to my embarrassment, beginning at 6 AM and continuing through the day she told every nurse, med student, doctor, cleaning person, food delivery person and anyone else that ventured in to our room that it was my birthday. As the day progressed it seemed as though everyone in the hospital knew it was my birthday. Every time I passed someone in the hall I was told "Happy Birthday". She also somehow got cupcakes delivered to our room. She is amazing. She is an amazing wife and an amazing mother. Gaines has no idea how lucky he is that he will call Brittany his mom.

Thank you all for your prayers. The only reason we are able to keep our sanity through this journey is because God is present in our room. Hopefully we will have no news to report today.

Beau

Tuesday, April 14, 2009

28 Weeks!!!

We made it! I cannot believe we are actually to 28 weeks. So far its been a great morning. My attending doctor came in this morning with good news. They only have my preliminary sonogram report right now but he said it looked very encouraging. He also said that as long as Gaines stayed head down, I wouldn't have to have a c-section. I thought a regular birth would be too stressfull for such a small baby but he says that even small babies tolerate it well.

My doctor also mentioned my diabetes test this morning. They had to repeat the first part of my test because "the lab messed something up". I had to have my fasting blood retaken this morning at 6 a.m. Luckily, I didn't have to re-drink the bathroom cleaner. My doctor said that even though they didn't have that variable to look at that everything looked ok and I should pass. So that was more good news.

I forgot to mention yesterday that the supervising sonogram lady was asking me some questions about our situation and I explained it all to her. She said, "Well isn't that a hoot?" I told her I hadn't quite thought of it as a hoot but that yes, it is an interesting situation. I just thought it was funny.

One last thing. Today is Beau's 30th birthday. I am so blessed to have such a great husband to be by my side on this adventure. I am so thankful for him today and always.

I know I have more to say but I can't think of it right now and I want to get this up. I'll probably post again later.

Hope you all have a great day! Please pray for us to make it to our new goal of 30 weeks.

Love to all,

Brittany

Monday, April 13, 2009

Finally...

Finally a chance to update. Crazy morning. I was woken up at 5 am by someone in a white coat. I'm assuming it was a med student. I know they do rounds early but it is so frustrating to be asked the same five questions by three different people within 30 minutes of each other. I'm sorry but it is. At 6 am my nurse came in to draw blood...the "before" in my Gestational Diabetes test today. She then did my vitals and made me drink the super sweet lemon lime drink for my test. Now I love a good sweet anything but that thing is ridiculous. It is so sweet and you have to drink it so fast that it really almost makes you sick. I think it kind of tastes like very sweet bathroom cleaner.

So after all that I was almost back to sleep and another doctor comes in...same five questions later; she leaves. Just back to sleep again. At 7 am my nurse comes to take more blood. They have to have the test source, and three more samples. 8:15...more blood.

9:00...more blood, hooked up to the monitor, breakfast arrives, and my transport for my sonogram shows up...all at once. They decided I'd been on the monitor long enough to go for my sonogram. I guess everything went well. It didn't seem like I was on very long at all though. I had the transport hold on for me to run to the restroom, put in my contacts and change into clean pajamas. The ride down was a treat. It was so nice to be able to at least sort of see what my surrounding were around here. Even the area right outside my door looked different than it does from in here.

My sonogram went well. Gaines is 2 lbs, 1 oz...give or take 5 ounces. He is also not breech anymore, although he still has time to turn around again. When the lady was doing the sonogram, she asked if we wanted to know the sex of the baby. I said sure, even though we already knew. "Looks like a girl" she said. Beau almost fell out. She explained that it was hard to tell but that's what it looked like to her. A few minutes later her supervisor had to come in because she was having trouble measuring Gaines' head (because he was so low...Reed was too). That lady confirmed that it was "definitely a boy". I think I heard Beau breath a big sigh of relief. You should have seen his face.

I haven't had a chance to talk to my doctors about the sonogram or the results of my Gestational Diabetes test yet so right now I don't know how they interpreted the sonogram or if I passed my test. I'll update whenever I hear.

On the way back from my sonogram they took me by my nurses station. I waved to them like I was in a parade. It was just so nice to see something other than my little gray room. Once I got back, my family and Reed were here waiting on me. I had a package from some of my sweet neighbors back home (thank y'all!) so we opened that and Reed entertained himself for about 30 minutes playing in the box of peanuts. I'll try and get pictures of that up here at some point. It was really funny. It just felt so good to laugh. I try not to laugh, sneeze, cough, cry etc. just to be safe. I know that's silly but I don't like doing anything that jars my body or makes me use my stomach muscles.

Right now Beau, Reed, my dad and sister are all at the egg roll. Reed looked SO cute. My mom is here with me and I'm getting ready to take a nap.

A quick encouraging story...my neighbor here had her baby earlier this week. Her water broke at 32 weeks and they were going to schedule an induction for her at 34 weeks. The night before her induction she went into labor on her own. Her baby was 4 pounds and something and is doing well. They think she'll only be in the NICU 7 to 10 days. I'm just so encouraged to know about that outcome at 34 weeks after what I was told about my possible 24 weeker when we first got here. Ten weeks makes a huge difference and I've already done 4 of them.

Tomorrow is 28 weeks. Please continue to pray against infection, for Gaines to keep developing and to stay strong. Also, safe travels for my parents and Reed this afternoon. We love you all for your prayers and support.

P.S. Today is Beau's last day in his twenties...He turns 30 tomorrow!

Brittany

Quick Update

I'll post more later...just wanted to let you all know that all is still well. Reed is here now but is leaving for the egg roll in 40 minutes so I'll update then.

Sunday, April 12, 2009

Day 25 is almost over

What an eventful day...Reed was in town, Brittany had a second gestational diabetes test, Gaines had two heart rate monitorings and confirmed Brittany is scheduled for a sonogram tomorrow.

Gaines' heart rate monitoring this morning and tonight went fine...what a relief. Brittany's temperature is still stable and there are no signs of infection.

Brittany's second gestational diabetes test was this morning. She did not pass. She will have another more accurate test tomorrow morning. If she fails the test tomorrow morning the doctors will regulate her diet. We have been told that this will in no way affect Gaines, however; it will make life a little less pleasant for Brittany.

Brittany has a sonogram tomorrow morning. Hopefully, Gaines has put on a little weight and is developing well (when Brittany was admitted 25 days ago Gaines was estimated at 1 lb 3 oz).

On a side note, someone from Brittany's hometown of Andalusia, AL visited us today. She is on vacation visiting DC with her family. They were walking through downtown looking for a Metro stop and came across GW Hospital. They had been reading the blog and recognized the hospital name. They decided to stop in and say hello. Now they can go back to Andalusia and say they saw all of the monuments, museums, and Brittany & Beau. Their trip is complete.

Beau

Happy Easter

Gaines and I are still here and still together but we did have a little scare last night. After my family left with Reed, my nurse hooked me up for my nightly monitoring. Well Mr. Gaines decided to drop his heart rate a couple of times so I got to stay on the monitor for a good bit longer and talked to two doctors. Drops in his heart rate are normal because of the lack of fluid. One of the purposes of the fluid it to float the cord. If you don't have much fluid the baby can "step" on the cord and cause his heart rate to drop. This is nothing new to us as it happens all the time and is expected. Last night he dropped it pretty low (I think it hit in the 80s...120-160 is the preferred range) and it took it a little longer than normal to come back up. That type of drop only happened twice but it was enough to send two doctors in here.

Anytime a doctor comes in that isn't on regular rounds (at the crack of dawn) it scares us. This first doctor just basically told us that I was going to have to stay on longer and watch to see if it kept happening. He explained that it could also have been Gaines moving around and the machine picking up my heart rate for a minute. Either way, we held our breath and stayed on the monitor. A while later that doctor and his attending came in. Now, if one doctor is scary...two doctors is really scary. I just knew that this was it. He was coming in to tell me they needed to take the baby. Luckily, that doctor thought everything was ok. He agreed that the drops were concerning but by the time he came in, Gaines heart rate looked "very reassuring" and like the "heart rate of a 35 weeker". Hopefully this morning's monitoring will go well. Please pray that Gaines' heart rate stays in the acceptable range.

Beau and I decided that this was God's way of reminding us that He is in control. After 25 days of nothing, you start to get a little bit of cautious confidence and maybe aren't relying on God quite as much as you were. I was quickly reminded that I'm not responsible for these positive results we've been having...God is. It was also a wake-up call for us that you can have those 25 good days but eventually something is going to happen. The younger doctor from last night reminded us that even though we are so much better off than we were, almost 28 weeks is still very early for a baby to be born. He listed some of the various problems with a baby born so early...thanks doctor...just what I wanted to hear.

In other medical news, I am now having my 3rd gestational diabetes test this morning. I have no idea why and neither does anyone else around here. The only explanation I can get is that they normally do it around 28 weeks for the best results. Who knows? Please pray that I pass.

Also, I have a sonogram scheduled for Monday. Please pray that Gaines is growing and developing as he should (or ahead of schedule!) and that there is a good leval of fluid around him.

My breakfast is here so I guess I'll run. I decided pancakes would be an appropriate Easter breakfast.

Oh, did the picture of Reed yesterday not melt your heart? That little lovefest lasted about a minute but it did wonders for my spirit.

Happy Easter!

Brittany