Saturday, October 31, 2009

Going Home from the Hospital (take 2)

So this is the second time we have posted a blog about going home from the hospital. Hopefully, there will never be a third.

The doctor (Pediatric Pulmonologist) examined Gaines this morning and felt like his cold is getting better and that the cold is past the point of developing into something else. Gaines will be on steroids for the next three days and we will increase the frequency of his albuterol treatments. The doctor did explain that it might take Gaines one to two weeks to get over this cold. He explained that it just takes a little longer for Gaines to recover because of his damaged lungs. Bottom line, we get to go home today.

Gaines should be discharged from Children's sometime this afternoon. We will then make the hour and a half trip home. Reed is going to stay with Grandparents for the rest of the weekend. It will be hard to be away from Reed this Halloween and not be able to take him trick or treating; but, we think it is best to keep him away from Gaines as much as possible right now. So without Reed at home tonight, it should be a fairly quiet night after two nights in the hospital.

Again, thank you to everyone for sending up prayers for Gaines. It is truly amazing how God has performed so many miracles in this little guy's life. Brittany and I know that God has his hand on our family because of the many prayers that are said for us. Thank you so much.

Beau

Friday, October 30, 2009

The Report

Didn't I tell y'all it would be sometime before lunch when we saw a doctor? Anyway, I think we got a pretty good report from the doctor (ie...doctor and the 8 folks he brought in here with him...back to the teaching hospital routine). Really we talked mostly about Gaines overall and not so much about his cold. I actually had to ask what we were going to do about that. Here's the deal.

Gaines' second x-ray didn't show anything different from his first one which is good. I was hoping that maybe they'd be able to see some improvement in his lungs but they only looked the same...no better but no worse. Of course, I asked this doctor for his assessment on how long Gaines will be on oxygen and he thought sometime between his first and second birthday. Pretty much what the last doctor said. Not exactly what I wanted to hear but whatever. We'll just try and be patient.

The doctor was pretty concerned about his reflux which I was happy about. He says other than nutrition the second best thing to help Gaines' lungs is just not to damage them any more than they already are. We do this by keeping him healthy and by him not aspirating. So, we are taking some new steps to help it. We are keeping his formula the same (found out why...they really want to keep him on preemie formula until 6 months adjusted age) but adding an extra teaspoon of rice cereal to his bottle. We are also staying on the Baclofen but adding Prevacid. Hopefully this will help. We had pretty much given up on this since he's growing well but maybe things will change with these new measures. Oh, also...I got the go ahead on feeding Gaines cereal by spoon as long as its not taking away from his bottles. Beau told the nutritionist that was a good thing since I'd already done it.

In other news we are going to try and wean off the lasix some. He is currently on 1 mL of Lasix a day and we will now move to .75mL and eventually to .5 mL.

Supposedly he's supposed to be getting some steroids for his cold. We don't have them yet but maybe they'll get up here eventually. The really good news is that we are going to watch Gaines today and see how he eats and responds to the steroids and if he does well, he might be able to go home tomorrow. I am mentally prepared to stay until Sunday but tomorrow would be great if he is ready.

Gaines is awake and playing right now. He seems to feel better and Beau and I agree that we think he's improving. He's back down to 1 liter of oxgyen and his SATS are pretty good.

We've had two visitors since we've been here (in addition to Beau's mom, dad and sister meeting us here with dinner, pillows, blankets, snacks...awesome I know). One was an old friend of mine that I had not seen in a pretty good while and the other was a nurse that works here and has been reading our blog. We don't know her but she told me when she saw his name on their board she had to come in and meet us. Small world. We love meeting people who have been keeping up with us.

I think that's about it for now. I think Gaines is getting sleepy and I'm going to try and catch a nap. I know that I didn't get to sleep until after 1:30 last night and it was broken sleep at best. I am always amazed at the way hospitals run at night. They want you to rest but really have no intention of you getting it. Sorry...kind of a grouch about that right now.

Please keep praying...it's working.

Love to all,

Brittany

Friday Morning

If you are just now tuning in, see the post below but we are at Children's Hospital with Gaines. He's got a pretty good cold and with his lungs, our pediatrician wanted to be proactive and go ahead and get him up here.

I don't have a ton to report right now as we really haven't seen a doctor (two residents so far but you know how I feel about that). They did an x-ray last night and found that it did not look like he had any pneumonia which is wonderful. They just did another one this morning so hopefully it will still look good. Our pediatrician mentioned that we should come in to the hospital so that Gaines could be put on IV steroids but at this point...he's not on anything. The did a nasal swab this morning to check for any common viruses like RSV and hopefully we'll have the results on that this afternoon.

His sats weren't great last night so we turned him up to two liters but he's doing better this morning so I'm hoping to be able to wean him down a little as he settles into a morning nap.

I have more to report on just our general situation here...observances of how annoying hospital life is really but I'll save that for my next post. Got to leave you wanting to come back for more. I think Gaines has noticed that he's losing some readers and had to pull this little stunt to get his numbers back up.

I'm going to get dressed and hopefully talk to the doctor around 9 (so in doctor speak sometime before lunch) and I'll report back as soon as I know something. Please pray for Gaines' little lungs.

Love to all,

Brittany

Thursday, October 29, 2009

Back in the Hospital

We decided to take Gaines to the doctor this afternoon to get him checked out. He has had a "wet cough" for the past day and a half. Our pediatrician listened to his chest, measured his breathing, took his temperature, etc. Long story short...we made the trip to Birmingham tonight and Gaines has been admitted to Children's Hospital.

We think that Gaines has just caught a cold and it has really hit him hard. More or less, the doctors admitted Gaines to make sure that he doesn't get any worse. Hopefully this cold doesn't develop into anything else. We will post more as we know more.

Please pray for Gaines to get better.

Beau

First Cold

Just a quick prayer request for Gaines this morning. I am afraid that he's picked up Reed's cold. Tuesday afternoon his head sounded a little stuffy and by yesterday afternoon his chest started sounding pretty congested. I'm trying not to be terribly worried right now since he has no fever and his sats are still great...I even saw 99 and 100 some last night, but a few prayers going up would be appreciated. I'm interested to see how he responds to this cold and hoping that he shakes it off easily. Eventually his immune system is going to need to be built up so I'm ok with a little cold as long as it doesn't turn into anything major.

His home health nurse came over yesterday and listened to him and thought he sounded fine and he has an appointment tomorrow for his next synagis shot and quick check-up with his pediatrician so I'm trying to decide if we should be calm and just wait since his sats are still ok or be proactive and go ahead and go in today.

I'll try and update later tonight.

Love to all,

Brittany

Sunday, October 25, 2009

Pictures and a Video

Below is a video of our two sweet boys and a few pictures from Reed's Birthday.

video


Reed's Birthday breakfast at Chik-Fil-A.


Reed having a birthday cupcake/ice cream with his class at school.

Reed's new chair he got for his birthday.

Reed's new bike.

Wednesday, October 21, 2009

Just a couple of quick things. First of all, Gaines was weighed today and he seems to be back on track. He gained 8 ounces which is just over what he should be gaining. He is now 12 lbs 1 oz. He doesn't look any fatter to me but he is definitely a long little joker. The home health nurse mentioned today that he is almost hanging off the scale. So, that was good news.

He's still spitting up regularly and in large amounts but he is taking more in so I guess he is growing. As long as he is growing I can handle the spit ups. Its still super annoying and Alabama Power loves the amount of laundry we are doing these days, but I can handle it. I am however, starting to take matters into my own hands. Yesterday I fed Gaines cereal. He did great with it. He gagged on it here and there but it all stayed down. As did the bottle that followed it. No doctor has really been in favor of doing cereal or baby food at this point as the bottles are so much more caloric for him but I figure if its in addition to the bottle, no harm done. Last night's bottle stayed down so we'll see if it keeps up. Granted, his last bottle of the day is generally his best at keeping down but still. I think we might try cereal twice a day and see what happens. I remember when Reed was little and I'd ask about him spitting up the doctors told me that he probably would until his food started getting heavier, so we'll see.

The Early Intervention folks came over yesterday to assess Gaines and see if he qualifies. To qualify you have to be more than 25% behind your adjusted age. Gaines' adjusted age is 3½ months and he tested as a three month old. This means he is less than 25% behind...a really good thing. Now, he still doesn't really want to hold his head like he is supposed to so she didn't factor that into his score. Right now, there are a couple of reasons that he could be holding it back: 1. Helps him breath. 2. Helps with his reflux hurting. 3. In and effort to keep pressure off of his hernia. The hope is just that he is able to sit in his bumbo chair by adjusted age 6 months with his head held upright for a minute. PLEASE pray with me that he makes progress in this specific area.

I have a peace about his lung issues and the reflux as I know that he will outgrow them but the head issue/milestones meeting really weighs heavy on my heart. I so badly want Gaines to be a "normal"kid but to get to that point the first step is good head control. I have to admit, I've had a really hard week worrying about that. I KNOW that I can't control it and that we are doing everything that we can do and I KNOW that we are tremendously blessed to have Gaines in our lives no matter what but having a giant question mark about your child's future is a very hard thing to deal with. I'm just praying that it is God's will to be completely without any signs of his prematurity and rough start in life and that he will be an example of God's grace and answered prayers. He has battled through so much already and I know that he will keep fighting.

So, back to EI...the good news is that he technically doesn't qualify for EI but because of his risk factors, he is going to be able to receive the services. Risk factors like his prematurity, etc. So, we are now waiting on an administrator to work up a good plan for him. The other positive news from that appointment yesterday is that his private physical therapist is also his EI therapist and she saw him yesterday for the first time in about two weeks and was really pleased with his progress.

Now for Reed, he had a great two year old check-up this week. He got a finger prick (no crying) and a flu shot (big tears) but he was so good throughout the whole appointment. Our doctor thinks that he is ready to start potty training so I think we'll see how that goes this weekend. Any tips there are greatly appreciated. Sounds like more laundry to me but maybe he will take to it well. OH, one more thing. Reed got a "bike" (tricycle) for his birthday and yesterday he was riding it using the pedals and everything. So grown up!

I think that's about it for now...my eyes are so sleepy.

Love to all,

Brittany

Sunday, October 18, 2009

Week Recap

So have y'all forgotten about us? Its been over a week...but in my defense its been a crazy week. I've had an event going on for work so I was leaving here before 7 and getting home after 10 for a couple of days. Plus, Friday was Reed's birthday so we've had that going on. I iced his cupcakes Thursday night (PS, this was the first time I have frozen cupcakes but I have a friend that does it all the time. I just put them in tupperware...they turned out great) but the real extravaganza started Friday.

Friday morning, Beau and I took Reed to breakfast at Chick-Fil-A, that afternoon I went over to his school for cupcakes (my company has an on-site daycare) and that night we met family at our favorite Mexican restaurant for dinner...Gaines stayed home with Terri (the nanny). That was the first time that Beau, Reed and I have been out to dinner since Gaines came home. We had a great time and Reed seemed to really take to the whole birthday thing. Presents, cake, extra attention...what's not to love.

My mom stayed with us all weekend so Beau and I were really able to spend a lot of time with Reed. He's been a real trooper since March so I wanted to really make his birthday super fun. Saturday afternoon we took him to the fair that happened to be in town. Two highlights there...he pointed to one of the cows in the livestock area and said..."Hippo". Also, he must have been impressed with the ferris wheel because he kept looking at it and saying, "Beautiful". I've never heard that word out of his mouth and there he his using it to describe the ferris wheel. Sidenote there, is the ferris wheel not the scariest ride? I hate them.

Saturday evening I let Reed paint pumpkins and by default, his whole arms while I was in the kitchen (newsflash...two year old + paint = giant mess). Today Beau and I were able to take Reed to church before heading to Playhouse Disney Live this afternoon. Reed is now the proud owner of a Handy Manny hat (among various other very generous gifts) and he got to see the "real" Mickey Mouse. I broke the news to him tonight that as of sundown...the birthday celebration was over. He was so worn out he went to bed early tonight.

The Gaines update is really just about the spitting up. Last week he only gained one ounce...he should be gaining an ounce a day so last week was not so good for him. I kind of think his spitting up is worse even though we changed formula (Similac Neosure) and medicine (bacloven?? I think). Our pulmonologist consulted with a GI specialist this week to come up with the new medicine. It's actually a medication for something else but happens to really work well on reflux...supposedly...I don't think it's working too great. He is taking more at each feeding but still spitting up almost every feeding. I'm waiting until he's weighed on Wednesday to call back. He should be weighed again Wednesday so I think we'll know a lot more then as to how he's doing. I wasn't so excited about last week's weight gain but I won't be concerned unless it happens this week too.

Also, I think that Gaines is making some progress with his head control and development. He's doing better about not holding his head so far back and has been playing with his toys a good bit. Please keep this prayer request in mind this week...I really would love it if you all would pray for his head control to keep developing. He has to get that down before he can master sitting up, standing, walking etc. I'll feel so much better about things once we have that under control. Its probably my biggest concern right now...he's doing great on his oxygen.

I think that's about it. It's been a long week and I'm worn out. Please continue to keep Gaines and our family in your prayers and forgive the lack of posting. I'll try and be better this week.

Love to all,

Brittany

Saturday, October 10, 2009

Weekend, Laughing and Random Commentary

Hello all. We've been enjoying another nice weekend with everyone under one roof. Reed and I grocery shopped and then picked him up a new pair of church shoes. Side note there...has anyone bought kids shoes lately? We just got a nice pair of the little black and white saddle oxford shoes for winter (he outgrew his other ones...I was just planning to let him wear his summer ones all winter...totally uncouth, I know) but I was shocked by the price of them. Maybe its just me but shoes for Reed should be $20...max. Oh, and PS, they are navy and white...not black. I always thought they were black but at both stores I checked, they were navy. Weird.

Sorry, I got off track. We also had a visitor today. One of Beau's good friends who lives in Dallas came by for a visit. Gaines has actually had a couple of visitors lately. One of my good friends stopped in this week and my sister got to see Gaines for the first time since he's been home. We are still being very cautious about exposing him to too many people but I think Gaines appreciated getting to see a few new faces.

Speaking of Gaines he is continuing to do well. He had another great weight at this weeks' weigh in (he's 11 lbs 9 oz now). Right now they want him gaining one ounce a day and he's gaining just over that. We are so thankful that growing doesn't seem to be a problem right now. He's doing great on his oxygen and its all I can do not to bump his flow down a little bit. I'm not supposed to mess with it but its tough. Reed actually tested Gaines a little bit twice today. Thankfully his concentrator lets out an ear piercing alarm if the flow is messed with because Reed turned Gaines down to zero twice today. He didn't know better but the second time it happened there were tears involved. I don't think it will be happening again.

We arrived a little early for Gaines' physical therapy appointment this week so we stopped by the NICU to say hi. I think his nurses were happy to see him and they all thought he looked great. Our favorite doctor was on(I probably shouldn't call him our favorite because we loved them all but there was just something about this doctor that we really liked) and I mentioned to him about Gaines laughing these days. I could tell in his face that he thought it was a really good thing. I thought it was a big deal neurologically and talking to him confirmed that for me. We've only been gone a month but it was weird being back in the NICU.

I'll be working a lot of late nights this week so keep Beau in your prayers. He'll have Reed and Gaines by himself a good bit next week. Also next week our little Reed turns two. I cannot believe he's going to be two. Really I can't believe I have two kids under two. What was I thinking? Our house is ridiculously crazy at times but I really do love it.

Back to our weekend, I try and cook on the weekends when I have a little more time so today I made a big pot of chicken and dumplings. I'm always proud of myself when I make something that my grandmothers make. Tomorrow I'll make cupcakes to freeze for Reed's birthday. Being able to cook for my family makes me feel like a better mother for some reason.

I know this has been a completely random post but that's pretty much our life these days. Check out the video below of Gaines laughing. Its not his best laugh but it the best we could catch on camera...and ignore my annoying high pitched baby voice.

Love to all,

Brittany
video

Tuesday, October 6, 2009

Couple of Quick Things

Just a couple of quick things. Gaines' swallowing test went well yesterday. The test showed that he is not aspirating at all when he eats. Why we were checking that, I have no idea. I thought the test would give some insight into why he's spitting up, but no. I thought the test was kind of an afterthought when the doctor suggested it but it was such a crazy day that I didn't question him on it. Normally I question things to death. I don't mind doing what people ask but I always want to know why. Anyway, I think it was a waste of time but whatever.

After the test I decided to check with our pediatrician about switching formulas. Gaines is on Enfacare right now. Its a formula for preemies. Even though he is no longer a preemie, they want him on this formula because of all the extra nutrients...not just the extra calories. So, because of this, I wanted to check with a doctor before I just switched him. Our pediatrician didn't feel comfortable switching him right now so I think we'll check with the pulmonologist/nutritionist tomorrow and see what they think. For now, we really respect our pediatrician so we'll stick with what he thinks.

Two other points of interest...Gaines laughed last night. He's been smiling a lot but I'd never heard him laugh. It was such a great sound. Made my heart happy. Also, he rolled from his tummy to back today. He was propped on a small blanket so I don't really count it until he does it flat on the floor but it he was not propped much so maybe he'll do it "for real" very soon. This makes me really happy as I am pretty anxious about him catching up on his milestones. I mostly worry about head control but its awesome to mark any of them off the list.

This is already much longer than I had anticipated but I just wanted to share. My eyes are so sleepy. My rooster crows around 5 these days. If anyone knows how to fix a 2 year old rooster...let me know. He's killing me.

Love to all,

Brittany

Sunday, October 4, 2009

Weekend Update

Hello all. I feel like I haven't posted in so long that I need to reintroduce myself. It's crazy to think that we used to update this thing multiple times a day. There is no way we could do that now. It's amazing to me that two children are three times the work. Not complaining...just an observation. We are crazy busy around here but its an awesome feeling.

We've had a pretty good weekend here. Reed and I ran some errands yesterday morning which included getting him a haircut and picking up a couple of Christmas presents. I know...it's barely October. I just like to shop early so that when the actual Christmas season rolls around, I can enjoy it. Anyway...we pretty much just watched football and hung around the house yesterday afternoon. Beau and Reed went to church this morning and the zoo this afternoon. Gaines and I have been spending a lot of good quality time together today. He is cat-napping now.

Let's see...the Gaines update. The doctor has changed Gaines' medicine from Zantac to Nexium but it doesn't seem to be working so hot either. He still spits up like crazy...but the medicine should be making it less painful for him (think about all that stomach acid coming up). He has that swallowing study tomorrow so hopefully that will go well. I'm not exactly sure what we are looking for there but pray for favorable results. About the spitting up...someone asked about changing his formula. I've been wondering that myself as well. All I can figure is that he needs to be on this formula he's on. I'm pretty sure its for preemies but even though he's past that stage, he still needs all the extra stuff that's in it. I think to give him extra nutrition because of his lungs but also to replace some of what the diuretics take out (remember he's still on 3 of those).

Went off on a tangent there, sorry. Gaines got weighed at the pediatrician's office Friday and it was another perfect weight. Thank goodness for that or I'd really be stressing about this spitting up business. Developmentally he seems to be doing well too. Every time he goes to physical therapy I learn a little more about what he should be doing. Right now we do stretches to stretch his hamstrings and ankles...I guess that would be Achilles?...and try to get him to use his front neck muscles. We also do things like put him on his side and let him try to play with a toy in front of him with his top hand. There's just all kind of things. His physical therapist is great and the good news is that we will see her through Early Intervention as well...as soon as that gets set up. It seems to take a little while.

Gaines is growing and doing great and I am beyond thankful for him and how far he has come. I've been thinking a lot lately about that. I remember his first day here when the NICU doctor came and got us from my post partum room because Gaines was not doing well. We sat in that NICU clinging to each other as we watched a team of doctors and nurses work on him. We watched the numbers on his monitor drop and our hearts sank as the nurse asked if we wanted a chaplain to baptize him. That was a hard day and there were many other very hard days...that seems like the understatement of the year...but look at where he is now. God is so good.

So now, as I continue to pray for Gaines' complete healing, I know in the back of my mind that it would be a miracle for him to come out of this with no lingering effects but I also know that him laying in my floor sleeping sweetly right now is a miracle and I know that they do happen and I know what an awesome thing prayer is.

Please continue to keep Gaines in your prayers. Pray that his little lungs will be healed and that he'll be up and running around with his brother very soon. Oh, and for safe travels tomorrow for his appointment and all the little babies out there fighting for healthy lungs.

Love to all,

Brittany