Wednesday, September 30, 2009

Wachovia Fraud Department

It has been four days since we last posted a blog. Amazing isn't it? When this journey first started there was a reason to update the blog three, maybe four times a day. Its so nice that we can go four days with not much news.

Probably the biggest news in the last couple of days is Gaines' weight. The doctors are wanting him to gain about 1 ounce per day. He was weighed today for the first time in 5 days and guess what...he gained 5 ounces. Exactly what the doctors want him to gain. Oh by the way, you might want to sit down for this one. Our little 3 pounder is now 11 pounds 1 ounce. The only other change this past week has been medication. Gaines is continuing to spit up 3 to 4 times per day. He has been on Zantac but today he was switched to Nexium. Please pray that Nexium will be his "miracle drug" and will help with his spitting up.

On Friday of this week Gaines gets his first synagis shot. This is a shot he will get once per month during the winter to help prevent RSV. Thank goodness for insurance...the shot is ridiculously expensive. Oh yeah, I wanted to mention one funny thing that happened. Our Wachovia debit card was red flagged by the Wachovia Fraud Department because we have spent so much money at CVS in the past two weeks. We thought it was funny...sort of.

Please pray that Gaines continues to get better. Below are a few new pictures of our boys.

Beau





Saturday, September 26, 2009

Longest Post Ever?

Hello all. I'm still alive. Just adjusting to life with two kids and loving every minute of it. Right now I'm just killing time until Gaines' ten o'clock feeding so I thought I'd fill you in on what's been going on. Gaines is still doing really well at home and he's had a really good week. Per the pulmonologist's instructions, he's still on one liter but his sats have been great. His monitor doesn't pick up well when he's awake because he's so active but when he's sleeping he sats between 97 and 99/100. It's all I can do not to "accidentally" turn him down just to see how he'd do.

I believe that Beau posted about our weight concerns in his post below but I'm feeling better about things after Friday's weigh in. All week I worried that he wasn't going to gain because he still spits up so much won't always take all of his bottles. Mostly its just his middle of the night bottle. We are still supposed to wake him up at night to feed him because his nutrition is so important to his lungs getting better but I think if he was given the chance, he'd come pretty close to sleeping through the night. I think that if he's still steadily gaining in about two weeks, we'll quit waking him up and just let him dictate what he wants to do. We've kind of settled into a routine on his nighttime feedings. I do the 10 p.m. one and Beau does the middle of the night. He chose it so don't feel too sorry for him.

Gaines also had a really good physical therapy appointment this week too. His therapist was pleased with where Gaines was right now and was cautiously optimistic. She showed us some new stretches to be doing with him and gave us some goals to be working towards. I think he's doing pretty well. This child will be a rubber band by the time I get through with him. He gets stretched A LOT. I don't want him to have some problem later in life that could have been avoided if I'd been more diligent about his PT. I was so worried going in to this appointment that Gaines would be behind on more things than I realized but I came out feeling better.

Gaines got a new baby gym so that he can practice batting and grabbing at toys. He had one but it really wasn't a very good one. It was Reed's and I only chose it because it matched all his other stuff. Rookie mistake. Anyway, Beau brought it in the other day and Reed was pretty excited about it because up until now, any toy that came into the house was for him. He was devastated when I told him it was for Gaines. I mean, big ole crocodile tears. It was the most jealousy that I've seen out of him since Gaines has been home. Even this morning he pointed at it and told me, "That's mine". I sweetly told him that no, it was Gaines'. More tears. I think he finally got over it when I pointed out the giant basket of toys two feet away that were all his. Other than, that he's been pretty good about Gaines. Did I tell y'all that he told me he needed help with his sippy cup when he saw me feeding Gaines a bottle? Yeah, I got a, "I need hep mama. Mama, I need hep." Sweet little thing. Oh, one more thing about Reed. He counted to 10 for me tonight. Not even two and he can count. Genius.

Gaines is still sweet as ever. He really is a good baby. He doesn't cry much and when he does, all you have to do is lay him in the floor and let him wiggle around. His head control has gotten a lot better and I think we are going to bring his exersaucer in tomorrow. Just for little bits of time. I think it really helped Reed when he was a baby.

This morning I ran into one of Gaines' NICU doctors at the grocery store. If I had to choose a favorite it would probably be this one (although we loved them all). I was so glad to be able to give him a good report. It was weird seeing him out of the hospital. Have I mentioned how thankful I am to be out of the hospital? I mean our life is crazy busy with Reed and Gaines (and all that comes with him...feedings, medicines, breathing treatments, exercises, countless appointments, prescription claims to file, etc.) but it is awesome. We've had two normal weekends at home and I'm loving it. No hospital visits, no taking turns with our children, just normal...or as normal as our life is going to get right now. We still don't take Gaines out so we have to work around that, we have a pharmacy in our kitchen and Gaines basically lives in two rooms of our house (he's never been in his own room because his oxygen cord won't reach) but its our normal and it works for us.

I guess I'll run for now. This post was super long and its time for Gaines' breathing treatments. We got switched from Pulmicort to Flovent which is much faster and MUCH less expensive thank goodness. Now maybe we can just get Reed switched after his next appointment (he gets the treatments for his asthma).

Oh...two questions that we've gotten that I wanted to address really quickly. As far as I am aware, Gaines is not eligible for any sort of government assistance. I understand that babies born below 1000 grams are eligible for Social Security and thus medicare and WIC, etc but Gaines was thankfully above this weight. Believe me, I'd take advantage of anything he was eligible for.

Also, I didn't plan to call both of my boys by their middle names it just sort of happened. We knew that we wanted Reed to be called Reed and that we wanted to use John (both are family names) in his name...I just thought John Reed sounded better than Reed John. Same with Gaines. Both names are family names, we just wanted to call him Gaines and I thought Thomas Gaines sounded better than Gaines Thomas...actually both of those are ok really but Reed John doesn't exactly roll off the tongue. Neither of my parents go by their first names and warned me that I would be ruining their lives (that's an exaggeration but they did express an opinion on it...as did other people) but Beau isn't in Beau's real name anywhere and he says it wasn't a problem for him so we just did it.

Now I'm really going...that was a lot of randomness. Please keep us in your prayers. Gaines still needs them.

Love to all,

Brittany

Friday, September 25, 2009

Good Weight Gain

It seems as though every week there is something new to worry about. This week the worry has been weight gain. Gaines gained a good amount of weight his first week home from the hospital...almost too much. He gained 9 ounces his first week at home weighing in at 10 pounds 10 ounces last Friday. He then lost weight last weekend and weighed in at 10 pounds 8 ounces this past Tuesday. Brittany and I were concerned. The Pulmonologist made it very clear that Gaines will get better as he grows. It was disheartening to see him lose weight. Since Tuesday we have been praying for weight gain. He was scheduled to be weighed today and we were hoping he would gain two, maybe three ounces. He was weighed this morning and he had gained 4 ounces and now weighs 10 pounds 12 ounces! I know all of this sounds kind of ridiculous...worrying about ounces. Its just that Gaines will get better by making small steps and we get excited when we see him moving forward.

Gaines also had his first physical therapy appointment this week. The therapist thought the tone problems in his legs was limited to his hamstrings. The therapists showed us specific stretches we should do with Gaines to help. The therapist also showed us several activities that Gaines can do that will help him develop. We take him back for physical therapy again next week.

Not much else to update right now. Please continue to pray for Gaines to grow and for his lungs to heal. Also, please pray that our household remains healthy.

Beau

Tuesday, September 22, 2009

The Pulmonologist Appointment

So sorry for not updating about yesterday's appointment but it was a looong day. Gaines' appointment was at 11:45 and we didn't leave Children's Hospital until after 4...just in time for 5:00 traffic. By the time we got to Montgomery, picked Reed up (he went home with a friend from school yesterday), bathed Reed and put him in bed we were both exhausted .

So, let's see what I can remember. When we first arrived and got Gaines' name situation worked out (he was listed as Gaines but really his first name is Thomas). I know, we ruined his life. Ruined Reed's too (John Reed) but he doesn't have as many appointments as Gaines so its not a huge issue for him. Anyway, when we first arrived we went for an x-ray and had some lab work done. We then met with a nurse, a nutritionist, a social worker and finally the doctor. We both really liked the doctor and since he's the doctor our niece sees, we knew a little bit about him...and him us.

Really he only made some minor changes to Gaines' medicines. We've switched from Pulmicort to Flovent which is much less expensive (hallelujah, Pulmicort is definitely not cheap) and takes less time to give/take the breathing treatment. He increased his Lasix and Zantac just a hair and the plan is to let him outgrow his other diuretics. Basically as he gets bigger, the dose gets relatively smaller. We were instructed not to mess with his oxygen right now. The doctor will give us direction on this at our next appointment in two months. Not exactly what I wanted to hear but I'll take it. Of course I asked how much longer the doctor thinks Gaines will be on oxygen. He thinks at least until his birthday. Again, not exactly what I wanted to hear but at least we know that its something he will grow out of.

The only other little change is that we are adding rice cereal to Gaines' formula now in hopes of helping with the spit ups. I think that its helping some. The doctor did want Gaines to come back for a swallowing study in a few weeks. Basically he will drink things with different consistencies that has barium in it and will show up on an x-ray type thing. Hopefully that will rule out any problems with his upper digestive tract. I really don't think that's the problem because he never spit up before he switched to formula a few weeks ago. I'm hoping the rice cereal will help but he has spit up twice today...both times after his larger feedings. Who knows. Just pray that his weight gain keeps up. He's actually dropped a couple of ounces since last week (today he weighed 10 pounds 8 ounces). Not too much...he's still in a good range, we just want to keep moving forward. The doctor really impressed on us how important Gaines' nutrition is. His lungs need to keep growing to get better.

That's really about it for the appointment but I did want to touch on something that Beau and I realized yesterday. As we walked around Children's hospital we saw lots of kids and their families coming and going...its a huge hospital and it was full of sick kids. Some worse than Gaines, some better than Gaines. It reminded me that I'm not the only mother in the world dealing with a sick baby. Their are lots of families out there struggling with the heartache that comes with a sick child. I just hope that they have the same support system that we do.

Gaines has a physical therapy appointment on Thursday. Please pray that this goes well and that Gaines is making progress on catching up. I'm particularly nervous about this appointment because of the possible CP talk we got a few weeks ago. I'm really hoping that we have more marks in the probably not category. We know that eventually Gaines will get over his lung issues but I'm nervous about this because its something he'll always have. I KNOW that in the great scheme of things that it is silly to worry about but a mother can't help wanting "normalcy" for her child.

Please keep us in your prayers. Particularly good growth, lung health, and for Gaines to overcome any physical setbacks he may have.

Love to all,

Brittany

Saturday, September 19, 2009

New Pictures and Videos

Everything is still going well. Gaines actually slept through the night Friday night. We're not sure if he is supposed to. We have been feeding Gaines every four hours...10 PM, 2 AM, 6 AM, etc. Friday night he would not wake up for his 2 AM bottle and then slept until 5 AM. We are going to ask the pulmonologist about this at Gaines' appointment on Monday. Maybe they will let us skip the middle of the night feeding since Gaines is doing such a good job gaining weight. He left the hospital a week ago at 10 pounds 1 ounce and he now weighs 10 pounds 10 ounces. It would be such a blessing if it the pulmonologist allows him to skip the 2 AM bottle. Waking up in the middle of the night and then chasing Reed around during the day is taking its toll.

Other than being a little tired, all is well in our house. Below are new videos.

video

video

Thursday, September 17, 2009

Reed's feet are Bigger

Sorry for the delay on posting but we have been busy with life. I feel like our life semi-stopped in March but we are now back where we should be. Home with two little boys. Everything is continuing to go well. Gaines is doing great on his oxygen and had a good check up with our pediatrician who we L-O-V-E. He endeared himself to us even more at Gaines’ appointment. Before we left, he asked if he could pray for Gaines. Knowing that the people who have been caring for Gaines are believers really make my heart smile.

I’ll try and remember the details…The plan is to get Gaines the RSV vaccination at his next appointment Oct. 2. The nurse is working with the insurance company to get it approved. The shots are about $1000 apiece and he’ll need one once a month through the winter months so hopefully the insurance company won’t have a problem with it. He’s considered high risk so it should work out fine. Gaines is one of their top customers I’m sure so hopefully they’ll push it on through. It will be a drop in the bucket compared to everything else they’ve paid on him.

The only mild cause for possible concern is that Gaines has gained a good bit of weight in the last few days. The question part of this is that he has been weighed three times since he was released and once right before…each time on different scales…so four scales. First he was 10.1 then 9.15 then 10.6 then 10.10 (those are ounces after the .) His SATS seem to be the same, he doesn’t look like he’s retaining fluid (puffy) and his lungs sound great (or as great as his lungs can sound) so HOPEFULLY it is just good real weight. Our pediatrician spoke with one of our NICU doctors and he wasn’t concerned so I think it will just be something that we watch. He’ll get a few weight checks in the next couple of days so maybe that will tell us more.

We are settling into a sort of routine at home. I don’t know if you can ever have a good routine with small children but we have some sense of what’s going on when. I’m not really sure how we are going to manage things when my mom leaves on Friday but we’ll figure it out somehow. The house just might not stay as straight, the dishes my not be washed as often and we might make it down to our last pair of underwear before the laundry gets done (and lets not forget those thank you notes)…but isn’t it great? Not too long ago I had all the time in the world to do that sort of thing but Gaines wasn’t home with us. I am really trying to embrace all the frustrating parts about a new baby (nighttime feedings, spit-ups, diapers, etc.) because I know just how close I came to not having those parts.

Reed is still doing great and actually touched Gaines for the first time last night. Its not that we haven’t let him…he just hasn’t been that interested so for the sake of Gaines’ health, we haven’t pushed it. Last night he touched Gaines’ foot and put his foot up to Gaines’ to compare size. We had to take of the orange and pink fuzzy socks of mine that Reed was wearing up to his thighs to do it, but feet were compared and unsurprisingly Reed’s were bigger. Reed also helped with Gaines’ bath last night (and by help I mean he squirted soap in my hand) but he was really interested in what was going on.

Brittany

PS-A few questions were asked in previous comments. Gaines does not have a SAT monitor belt...it is probe that wraps around his foot. Also, Reed does still attend daycare. We thought this was best for Reed and would allow Gaines' nanny to focus on Gaines.

Monday, September 14, 2009

Hibernating

Things are still going really well with Gaines. We’ve been a little MIA lately trying to settle into a new family of four routine. I think we are getting the hang of it. Gaines is doing really well on his oxygen at home and passed his blood gas test this morning with no problems. The thing we are most concerned about with him are his feedings. We are trying to figure out a schedule that gives him all the volume of formula that he needs every day. There are many times when he just will not take his bottle because he is so asleep. Not a huge deal with a regular baby…you just get off schedule. With Gaines, if he misses a feeding he misses a lot of nutrients that he needs to help his lungs continue to heal. I’m trying to not let it stress me out but I’ve caught myself twizzling my hair a lot today…a sure sign that I’m worried about something or deep in thought. We go to the pediatrician tomorrow so I’m hoping that he will be able to offer some insight.

We have a lot of appointments right off the bat but I think after the initial ones they will settle down some. We will also have home health nurses coming by twice a week to keep an eye on him. Nothing major, I think they just check weight, temp etc and look for any problems that we could be missing. I’m also trying to get Gaines enrolled in Alabama ’s Early Intervention Program. This is a program for babies/toddlers that are 25% or more behind in their development. The program will provide free therapists that will come to our house and work with Gaines. This is wonderful since many insurance policies do not cover physical type therapies. I haven’t researched mine yet but either way, I think it will be great for Gaines to get a little extra help.

I’ve been doing his stretches and working on his neck strength and I think they are both getting better. That could just be his mama talking but I think I see improvement.

I’m sure there are a million other things I’m forgetting to tell but that’s about all I’ve got for now.

Oh, Reed and Gaines seem to get along just fine. Reed likes Gaines and is interested in him but doesn’t get in his face and love all over him which I think is a very good thing right now. He knows which things belong to Gaines (“Jaines’ bed, Jaines’ chair”, etc) and looks for him in the mornings…once he remembers him.

My mom is staying with us this week and has been really helpful. We gave Gaines a bath last night and I think he really enjoys his little tub. He cried when he had to get out. Maybe he’ll get a bath the next time he wants to sleep through a feeding!

One more thing…this morning Jack (who sits on the back of the couch and looks out the window all day) saw something outside…probably a squirrel, so he started barking like crazy. Well Reed ran over there, jumped on the same couch and started barking and howling out the window as well. It might not be that funny to read about but it was hilarious this morning. We’ve also caught him several times walking around with toys in his mouth…kind of like how Jack carries them. He is such a funny little boy.

Reed had a runny nose over the weekend so please pray that it doesn’t turn into anything more and that Gaines’ appetite picks up soon. Other than those two things, we are doing great and loving life at home…hibernating for the winter.

Sunday, September 13, 2009

So Far, So Good

We've made it through the first 48 hours.

Thus far Gaines has adjusted pretty well to life at home. Before we brought him home, my biggest concern was that he would require extra oxygen once he was in our house. I guess my thought process was that he was doing so well in the hospital...a sterile environment. Our house is not a sterile environment. How could it be with a dog and a two year old little boy? I figured the new environment might cause him to require more than 1 liter of flow. Fortunately he is doing great. His breathing has actually been really good.

The only concern we have had since we brought Gaines home are spit ups. He spits up a lot. Our doctors assure us that his frequent spit ups aren't anything for concern. However, it does mean that we frequently clean up after him.

Again, so far, so good. Hopefully we will have more time to update later.

Beau

Friday, September 11, 2009

We're Finally Home

Brittany and I arrived at the hospital at 8:00 this morning after dropping Reed off at daycare. It was very surreal to be walking into the hospital knowing that we would be walking out with Gaines. After about 3 hours of too many details to mention, we loaded everything into the car and drove Gaines home. It was really neat to see him squint as we walked out of the hospital and into the sunshine. He has been outdoors only once before (during the transfer from DC) and that was at night. He saw the sun for the first time today.

The home health care company arrived at our home shortly after we did. We are now experts at all of the machines and gadgets. Right now Gaines is sleeping, his SATS are 97 and we are trying to put all of Gaines' stuff away. In just a few minutes I will go get Reed from daycare and he will see Gaines for the first time in almost two months.

We'll post more later...below are a few pictures from this morning. The first is of Gaines smiling at us this morning when we arrived at the hospital. The second is of us as we left the hospital. The third picture is of Gaines...happy in his new digs at home.

Beau

Thursday, September 10, 2009

Homecoming Eve

Not a lot to tell tonight. We are just getting ready to pick up Gaines tomorrow morning. Beau is out right now picking up prescriptions and he just put Gaines' car seat in the car. I let our rooster stay up later tonight in hopes that he will sleep past 4:30 tomorrow. Pray with me.

Today has been a great day. We said goodbye to some of our sweet nurses today. Very bittersweet. The nurses, women's director and nursing director all got Gaines a "Good Luck" cake. So sweet of them. I wonder if I will cry when we leave tomorrow? When we left GW I was ok walking out of the NICU but lost it in the elevator. I guess we'll see.

This afternoon as I was driving to the hospital I saw another rainbow but this time it was a full arched one...you could see both sides. I felt like it was God saying...I told you. He did.

Our road isn't over but we are in such a better place than we were four or five months ago. It was raining today as I walked into the hospital and I thought it was very fitting. It reminded me of those early days when we trudged back and forth from the hospital in the cold drizzly rain. I was talking to the nurses today and remembered some of those really bad, dark days. They seem so far away now. God never promised us an easy road, but He does promise to never leave us and I'm here to tell you its true. I am amazed and in awe of God tonight as I think back on how far Gaines has come. He is such a miracle and is definitely in this world for a reason.

Please keep us in your prayers as we close a chapter and open a new in our journey tomorrow.

Love to all,

Brittany

Wednesday, September 9, 2009

Movie Stars

Well, maybe not quite movie stars but interview stars. Beau and I did an interview today with the 700 Club. Well, I did actually but there should be shots of Beau and Gaines in the footage. I had never heard of the 700 Club before but apparently it is a Christian news based program on the religious channel (I should really know what its called!). They were in town doing a story on the Footprints Ministry and wanted to have a little piece on a family and they asked us to do it. Of course we said yes. Originally we thought we'd both be interviewed but at the last minute we found out they only wanted one. Beau encouraged me to do it so I did. I hope I did Footprints justice!

The only snag in the whole process was that by the time I got there, they had already filmed Gaines for the piece and his outfit was terrible. I was mortified. Of all the nice things he has...I mean, number one, the shirt was not one of my favorites and number two, the pants didn't match. They were just some random blue pants. He doesn't always have on my favorite outfits but he usually matches...I about died. I know...all the things we have going on and I'm worried about Gaines' outfit. Well, that's just me. If you see the piece (and of course we'll let you know when it will air) please pretend like he's wearing a little white gown with a lamb on it.

Everything is still set for a Friday release. We got his prescriptions today (all 9 of them)and took them to be filled. We'll pick them up Friday. Please pray that I don't stroke as they swipe my debit card.

We are super busy around here tonight. Getting ready for Gaines! Pack and play is up. Cradle is in our room. Swing is out. Burp cloths ready. Diapers lined up neatly in the diaper basket. We are all set...I hope.

Two quick things before I go...so much to do...bottles still need to be washed. First, Gaines will get a RSV vaccination soon but until then, Beau and I would like to limit his visitors. Just with it being cold and flu season...you understand. This flu business is so scary to me because you could be sick and not even know it. I know that none of you would want to be the reason he gets sick. And secondly, I owe so many of you thank you notes for dinners, gifts, etc. Please bear with me. I promise they are on my list of things to do. I'd really hate to get a giant black X on my social status. :)

Please keep us in your prayers.

Love to all,

Brittany

Tuesday, September 8, 2009

Another Chapter in our Journey Begins

This journey started on March 18 when Brittany's water broke, a new chapter began on April 24 when Gaines was born, another chapter began on July 8 when we were transferred from DC, and now another chapter of this journey begins Friday. Gaines is coming home! Brittany and I will arrive at the hospital at 8:00 AM and his discharge should take about 1-3 hours. He should be in our home by Noon on Friday. Unbelievable...it took 142 days but we are finally taking him home from the hospital.

Brittany and I will never be able to thank all of you. You will never know how many of your comments touched our hearts and kept us strong through the storms. There was a time when we weren't sure if Gaines would come home...a time when we prayed for God to spare him. It is because of all of you, all of his prayer warriors, that he will be coming home this Friday. From the bottom of our hearts...thank you.

Monday, September 7, 2009

The Pulmonologist

Just a quick update...

Gaines lost a little bit of weight last night (2 ounces) and now weighs 9 pounds 10 ounces. This is the third night in a row he has lost weight. This morning the doctor wanted to reduce his lasix but decided to wait until he could consult with Gaines' pulmonologist. The doctor should call the pulmonologist Tuesday morning and let the pulmonologist make the decision regarding the lasix.

Gaines' doctor is letting the pulmonologist make the decision because the pulmonologist will be "calling the shots" once Gaines is released. Since we are getting close to Gaines' release date, the doctors in the NICU have given the pulmonologist the authority to make the decisions. This also means that we really aren't sure if Gaines will go home on Friday. Again, even though the NICU doctors are leaning towards releasing him, it will be up to the pullmonologist.

Hopefully we will know a lot more on Tuesday night. We will update everyone as soon as we know.

Beau

Sunday, September 6, 2009

A Really Long One...

So much to tell.

Sorry for the delay in posting but I've been a little preoccupied. I just got home from the hospital not too long ago and the first order of business was a shower followed quickly by dinner. Being in that hospital room brought back vivid memories of my 6 week stay not too long ago and I had to get the hospital smell off of me...but let me get to the reason you all are reading...Gaines.

Friday, Beau and I were all set to spend the weekend with Gaines but late Friday afternoon Beau called me with bad news. He'd just found out that one of his co-workers (in a cozy office) had been in the office the last few days with the flu. Beau felt fine but we didn't think it was the best idea for him to be in such close quarters with Gaines just in case. So...I roomed in by myself.

Gaines did great and so did I. I was nervous for the first couple of hours alone with him but sometime in the middle of the night I started feeling more comfortable and was able to get a little sleep...in between every three hour feedings.

Saturday I was able to move my bed a little closer to Gaines' bed and concentrator (machine that turns room air into oxygen). He and I got in my bed and snuggled up for an early morning nap. I think we both slept great. I didn't really intend to sleep but it just sort of snuck up on me. We spent most of the day napping, resting, playing, reading etc. Gaines also got to watch his first college football game (roll tide by the way). It was a pretty relaxing day. He is just about the cutest thing I've ever seen and he really is a good baby. He rarely even cried.

Today was more of the same except that our nanny and my mom were able to come visit. The visit with our nanny (I feel ridiculous saying "Our nanny") really reinforced that we'd made a good decision with her. Before we met her, I thought that we'd talk to a couple of people before we decided on one but this situation was just too perfect. Beau and I decided to look at it as God providing for us yet again. It was His way of letting us focus on Gaines and not a nanny search.

As well as everything went this weekend with Gaines, there was a sort of dark cloud that dampened things. In my visit with the doctor on Saturday we talked about how well Gaines was doing with his oxygen situation and all the progress that he's made lately. He also mentioned some concerns that he had about the "tone" in Gaines' legs. Apparently tone means stiffness...I later learned from the occupational therapist that the muscles in the back of his thighs and calves were tight. He was also concerned about Gaines lack of head control. These two things can easily be explained as issues of prematurity and spending the last four months in a hospital but combined with Gaines' rough start, the doctors and therapists believe that he could have some mild cerebral palsy. The doctor told me that the chance was "probably very low" (I had to ask that question about 5 times to get an answer that I deemed acceptable) but not exactly what a mother (who finally feels like her baby is getting better) wants to hear.

This is not a diagnosis, only something that we are watching. If he does have it, he would be a mild case and it wouldn't be diagnosed until he was about 2 years old at the earliest. It could be as mild as walking on tip toes (which I believe can be corrected surgically) or more moderate like needing braces to walk. It could also be nothing and completely eradicated with physical therapy.

Thankfully, if he does have it (and I really need to research CP because I know very little about it), it is not a severe case. We'd already know about it from brain scans if it was severe. Along with all of our other prayer requests, please add this one. Please pray that through therapy we are able to correct the concerns and move forward with our healthy baby. I know that in the great scheme of things this is a relatively small thing, but any mother would want a happy, healthy, "normal" baby and I'm no different. I may not post much about this as its something I don't intend to waste energy worrying about but I will keep you updated as needed or with any progress.

It is interesting to me that many times along this journey, we would get some really good news but shortly after we'd be faced with some sort of possibility of something bad (possible heart surgeries, a rare genetic disorder, possible feeding tubes, etc). Something that would take our focus off of the good that God was doing but in the end turn out to be nothing.

Now, I'm not typically the type of person to go around talking about the devil because until this, I thought people who did were a little crazy...BUT, many times during this journey I have sensed how very real he is. I do not even pretend to understand why God lets the devil have his way with us (I think it might be so that we can glorify God as he get's us through our storms...my interpretation anyway) but the very real truth is that we live in a fallen world. We live in a world that God did not intend for us and because of this we have to contend with and constantly battle the devil in our choices, our thoughts and in our actions. I'm not saying that this CP possibility was brought on by the devil or anything like that, I just think its interesting that as we start to get better and better news about a release date, something like this pops up to take our focus off the good stuff that God is doing. I don't know...something to think about.

Moving on to the really great news...I've been saving it for last. If everything continues to go well this week, and as long as this week's doctor (of course we'll have a new one tomorrow) is on board, it looks like we could be bringing Gaines home next weekend...like in five days. Please pray for this to work out and for comfort, strength and peace for Beau and me. It will be very stressful at our house for a few days as we adjust to taking care of Gaines on our own.

We also ask that you pray that the timing is right on this. The last thing we want is to have to take him back to the hospital once he is released. Please pray that our family stays healthy so that we do not bring any bad germs in our house. Any illness like the cold or flu could be devastating to Gaines. We are extremely nervous about bringing Gaines home in the middle of this flu season. So, if any of you reading this think that you might be thinking about getting sick, or been around someone who sneezed or just looks sick...stay away from us! Please.

One quick thing about Reed before I head to bed. Tonight he ate a really great dinner so we let him have a piece of pound cake that my grandmother sent us (he loves it...and for good reason!). After he got done, Beau pulled the tray off of his highchair and upon seeing all the crumbs said, "Oh...my...gosh." To which Reed replied, "Oh.......My.......Josh". Probably only really funny to his mother but I thought it was pretty cute.

Please keep us all in your prayers and thanks for putting up with all my parenthesis and ...s.

Love to all,

Brittany

Thursday, September 3, 2009

The Good News Keeps Coming

I went to visit Gaines this afternoon around 1:45. I walked into the NICU, scrubbed up, put on my gown and headed towards Gaines' bed. As I arrived at his bedside, his Nurse told me he was at 1 Liter of flow. He had been at 1 Liter a good portion of the day and his SATS were above 95%. At one point during the morning, he was asleep on 1 Liter of flow and his SATS were 98% and above. What a great way to start a visit to the NICU. So many times you walk into the NICU just hoping that your child hasn't gotten worse...it's a wonderful feeling to walk in and hear they are doing better.

After hearing the great news, I picked Gaines up and gave him his bottle. The little guy sucked it down and then promptly fell asleep in my arms. I was sitting in a rocking chair at Gaines' bedside with him asleep in my arms and all of a sudden I noticed there were a lot of nurses kind of hanging around me. About that time the doctor came over. I think all the nurses just wanted to be there when I got the news. Long story short, Brittany and I might be spending the weekend at the hospital "rooming in". Let me explain.

There is the possibility that Gaines will be released next Friday. There is also the possibility that he will be in the hospital for many more weeks . Only Gaines knows which time frame is correct. Either way, the doctor thought it would be a good idea for Brittany and me to "room in" this weekend in preparation for his impending release date. "Rooming in" would mean they would put us in a Post Pardom room with Gaines. The doctors would switch Gaines' oxygen, monitor, gadgets, etc. from the ones in the NICU to the ones that he would be on at home. Then they would move him from the NICU to the Post Pardom room. This would give us the chance to become accustomed to Gaines' "equipment" during the course of the weekend. If we had questions or concerns we would have the NICU staff only 30 feet away. This would also give the NICU staff the opportunity to observe Gaines on the new equipment. Basically we would be taking care of him but the nurses and doctor would be able to monitor Gaines from the NICU.

We will find out tomorrow whether or not we will be rooming in. Apparently the hospital doesn't do this that often and they have to confirm they can get similar equipment that Gaines will be on at home. Again, this is not an indication that he is going home in a few days. We have spent more than 4 months getting Gaines ready to go home, now it is time to get Brittany and me ready.

Beau

PS- There was a comment to the last post asking if we would continue the blog once Gaines came home. We originally started this blog to keep family and friends informed of Brittany and Gaines' progress when we were stranded in DC. However, God has used this blog to recruit hundreds of prayer warriors for Gaines. Originally we had said all along we would "retire" from blogging once this ordeal was over. Who knows what we'll do. In the mean time, this journey is not over and we still need your prayers.

Wednesday, September 2, 2009

More Good News

Today was another good day. Gaines' nurse tried to wean his flow because he is doing so well. She was going to lower it just to see if he would tolerate it. When Brittany left the hospital this evening, he was at 100% oxygen and between 1 and 1.5 liters of flow. His SATS were good and he wasn't breathing too hard. He did gain a little bit of weight last night but not enough to worry anyone. By the way, he is 9 pounds 8 ounces...he is getting fat rolls.

I'm not sure if Brittany mentioned this but we did hire a nanny. The person that we offered the job to accepted. This is a huge weight that has been lifted. We agonized for weeks wondering how we would find someone that we felt comfortable with. Surprise, surprise...God provided for us.

Please keep praying for Gaines. He is so close to coming home.

Beau

Tuesday, September 1, 2009

Home Stretch?

Gaines had another pretty good day today. He is still on 2 liters at 100% and will probably be there most of the week. The doctor wants to give him plenty of time to get over last weekend's spell. He is also now on a daily dose of lasix...thank you very much. I've only been screaming this for how long now? Just kidding...kind of. I know the doctors know a LOT more about this than me but I just really feel like that's what he needs right now.

The plan is to try and wean Gaines down to 1 liter before he is released. He may still be released on 2 if he just won't go down anymore right now but I think we'd all feel better if he was at 1 liter. That way he would have a little wiggle room at home should he need it. The only other thing to do is to get him off the humidified air. Right now his air is humidified only to make it more comfortable for him to breathe...un-humidified air is very dry apparently. As his flow gets lower, humidified air becomes less of an issue so they will try and wean his flow some first.

Today's doctor told me that he didn't think it would be this week, and probably not the next but maybe after that. I take that to mean about 3 more weeks. I think they want to try and stabalize his feedings and medications as well as get him stable on whatever oxygen he needs right now. Pretty exciting.

I think that's about it for tonight. It's been a busy evening and I'm tired. Reed has been waking up at the crack of dawn (4:30 a.m. some days) and this morning was my turn with him. A friend of mine thinks he's part rooster. He's not crying or anything. Quite the opposite. He wakes up and is ready to start the day. Its hard to be upset with him because he's so sweet and happy but it makes for a very long day.

Please continue to keep Gaines in your prayers as we try and get through this home stretch (I pray that it is the home stretch). Please pray for his lungs and that he can handle one liter very soon. Also, please pray for patience for his mother...I am getting soooo tired of hospitals. I can't wait have my family under one roof.

Love to all,

Brittany