Tuesday, December 30, 2014

Closer to home

Brooks is really filling out! It's funny to say he looks chubby because he isn't even 5lbs yet, but compared to 2lb 14oz-he is chubby:)

So he had his 2nd eye exam yesterday and it was normal-yay! His poor little eyes were red after:( They said he tolerated it well though. He has another one in 2 weeks. Hopefully we're home by then, but we will still have to follow up in the office. He will also get the synagis vaccine before he goes home and monthly to help prevent RSV. Brennan got them all through the winter as well. He gets his thyroid rechecked on Monday. If it comes back high again then he will start medicine and follow up with endocrine doctors. He was just a little high so we're hoping it will come back down to normal.

We are getting closer to coming home. He has picked up well on the bottles and they said once he is at 70-75% bottles for a couple of days they will take out his NG tube and he can eat when he wants, but wait no longer than 4 hours. He was at 69% yesterday and he has really picked up last night and today so I'm thinking we are really close. He is trying so hard! They said discharge comes pretty fast once they start taking bottles, let's hope it's here before I know it:) We are ready!

Once we get home we will have lots of appointments. He has to follow up at Children's with their newborn doctors, get his eye exam in 2 weeks and follow up with his pediatrician (not sure how often yet). He will need weight checks and they offered home health visits or taking him to the pediatrician. I will probably wait and see how often. Since it's so cold and I will obviously like to avoid taking him out to avoid exposure, we may opt for some nursing visits. Our pediatrician does only well child visits in the morning and sick kids in the afternoon so that's a bit of a relief  for when he does have to go into the office, but still the less he is out the better.

We're just ready to bring this little man home!

Thursday, December 25, 2014

Merry Christmas Miracle!

We started Christmas at 2:30 this morning! Brennan was so excited that when he saw that Santa had arrived he was ready to open presents! He first asked to just open one, then two, then he was quickly snooping through everything (looking for his iPod) and I kept telling him to get away and we would open the rest in the morning. Well, the iPod was in a felt Santa gift bag and he spotted it. So I made Casey get up so he could open everything. He wasn't going back to bed either way so why not and how can you deny an excited kid on Christmas?? It's like waking up at normal time in the morning, seeing all of your presents and being told to go back to bed. Brennan and I stayed up for about an hour and he was soooo excited the whole time. You know, like a kid on Christmas morning-it was worth it:) He played around with the iPod this morning (normal hours of the morning) and did face time with Paw Paw (my dad), GiGi (my mom), my brothers and sister, Maw Maw (my step-mom). He loves it!

After that we went to visit Reese and Scotlyn and took their wreath. The old bow was faded so I got a new sparkly bow this year and decorated it with new butterflies too. I love our little wreath. I don't like having a lot of things there, I like to keep it simple. The holidays really have never been the same for me since we have to celebrate without them. Our little girls should be 4 years old and our lives so different. Every day has some bitterness added without them here, but my pregnancy (and mostly) my delivery and NICU stay with Brooks has stirred up a lot of memories and emotions surrounding their loss. We miss them so very much.

 I hope they are having a Merry Little Christmas in Heaven♥

The amazing Carly Marie and her beach Christmas Tree:)

We went to my mom's like we do every year. I had a lot of anxiety about leaving this guy with no family with him on Christmas, but as with every other day I am trying to keep things pretty routine for Brennan. Luckily he had some awesome nurses today (who work in his room all the time and have become friends♥)

And we went to visit when we left my mom's house. His outfit is from my sister, the bow tie is almost as big as his head:) He looks so cute though and the nurses loved it!

Unfortunately for Brooks he has been tortured with a few photo ops lately...I hope he can get used to it with this mama:)

Our sweetest little gift♥

Casey asked me what I wanted for Christmas and I told him I already have my present-the best one I could ever dream of and have dreamed of for the last three Christmases. And if I never got another thing again in my whole life to keep this baby boy that would be fine by me.

I LOVE when he puckers his lips like this:)

And when he stares at me...so sweet.

So this Christmas we got everything we could dream of and more. We have two more celebrations this weekend. We are so lucky to have so much family to celebrate the holidays with. Of course, it is not the same without Brooks being able to be with us, but just as I am adjusting to daily life with him in the NICU, I am trying to adjust to the holidays as well. Hoping it won't be too much longer.

As for an update on my little sweet pea-he is 4lbs 11oz-getting close to 5lbs! It seemed like his weight gain slowed and most likely did, I'm not sure what the weekly total is, but since he is taking bottles he is using more energy so that's kind of expected. He has done really well without the flow. He has been comfortable breathing, comfortable eating so it seems like he is tolerating it. Yesterday morning at 5am he did have an apneic episode, not associated with feeding the he required stimulation for. They said one episode was not enough to put him back on flow or restart the caffeine for and luckily he hasn't had anymore. If he was doing it consistently then they would consider one or the other. He did have a couple of episodes with feeds/reflux yesterday, no stim and the Nurse Practitioner said she is not worried about those at all. As he gets bigger he should grow out of those associated with feeds and they don't count those for needing the flow or caffeine. He had one dip in sats today, but he came right back up. She did push his tube in a little further just to be sure that since he has grown that it was in far enough. He slacked a little on bottles the first day after the flow was off, but he is picking up again and he took 2 full bottles last night and almost a full one for me. Once he is taking 75% bottles (consistently) he will get the tube out. One other thing is he has had a few newborn screens drawn and the first two were normal, but the last one showed an abnormality with his thyroid. They did some additional testing and one of his thyroid levels were high which shows that his body is compensating for low thyroid production. They talked to the endocrine team and they said they would check another in 2 weeks and they think it is just from him being premature. If it is still abnormal they will start him on some medicine to replace the thyroid hormone. They usually just have to take that for a year. If that's all we come out of the NICU with, that would be just fine. So he just needs to grow a little more and continue being a rock star with bottles and hopefully we can keep moving forward to our ultimate goal-home!

Tuesday, December 23, 2014

One less tube and 5 weeks old

Brooks got his oxygen flow off today:) I'm excited, but I'm afraid to get too excited because it's possible he may not tolerate it and have to go back on. So far he has continued to do well taking bottles despite not having the respiratory support, but it could catch up to him in the next day or two. So we won't really know if he will fully tolerate it for a couple of days.

He has been doing well with bottles, although they said he could slack a little while he is getting used to not being on the flow. He had been waking up more at night time and he still is. He took 3 full bottles last night! He did take a full bottle yesterday and today for me, but otherwise during the day he is taking anywhere from 5-20ml. A full bottle is now 39ml, (one ounce is 30ml). His nurse practitioner (who is amazing!) said he took 58% of his bottles yesterday. She is happy with his progress. She is so great about coming to update me every day and she is very thorough, I miss her when she isn't there. 

As far as the reflux, Brooks had really gotten to a point where he was recovering on his own without the apnea/bradycardia episodes, but he did have a couple today. She said it was just because he is adjusting to being off the flow. He didn't need any stimulation, but it was a change from what he had been doing. He has done well with growing out of everything else so it will just take time for him to grow out of this as well.

He is still gaining weight, but it has slowed. He is expending a lot of energy to eat now so it's expected. He is 4lbs 8oz.

This is a picture of him with no tubes-he pulled his NG tube out this weekend. When he is mad, that is the first thing he goes for! He does have one less tube to pull on now:)

The hat officially goes with another outfit, but my co-worker stitched his name on this adorable sleeper! It has the cutest reindeer on the other side, but it was hard to get both in the picture. It will have to be an after Christmas wear too so I can get a picture when he has filled it out:) Thank you Kathy!

Brennan came to visit a few days this weekend/week. He is so sweet with him♥ 

Thank goodness this guy is leaving tomorrow night, he has been causing trouble around here. 

Friday, December 19, 2014

Taking bottles!

When Brooks was weaning off respiratory support I felt like we were making progress daily...and we were. Then we kind of got to a lull where he just needed to grow...and he did. Now we're moving right along to the next steps. They discontinued his caffeine today. I figured it would be soon since he hadn't had any recent episodes, plus his episodes have all stemmed from reflux or spitting up which the caffeine doesn't really help for, but they left it on a little longer just in case. Let's hope he does tolerate being off the caffeine. His weight was only up 2 grams today, but he had gained so well the several days that he is up 200 grams for the week, which is ideal and right on target for him.

I talked to his nurse practitioner today about his plan, she was gone yesterday so just a little catching up and she wanted to talk to me about stopping the caffeine. She said the plan is to stop the oxygen flow this weekend or Monday, exciting, but a little scary. I just hope he tolerates it. She did say at this point she doesn't think it's doing much and I know they wouldn't do it unless they thought he was really ready. They just didn't want to do too many things at once today with stopping the caffeine. We aren't going anywhere at this point so it's no big deal to wait. We talked about the bottles and I guess so there is no confusion they have to actually have a certain type of order for the nurses to give bottles so she was going to change that. She said once he is taking 75% of his feeds by mouth they take out the tube and then he eats as he wants to eat, but no longer than 4 hours. 

So this morning I came in and talked to his nurse a little bit. She asked if I had been doing bottles. I explained how he had been sleepy when I was there the last couple of days so we hadn't done much. She said his night nurse said he was up with each feeding last night! Little turkey. They were kind of waiting for me to do the first bottles, but I told her I don't want to hold him back and if he is ready (awake and rooting) when I'm not there then to go ahead and try. He was sleeping when I got there and still sleepy for his noon feeding. Therapy came at 2pm and not just for a massage, but for developmental therapy and he still slept through the whole thing! By the time his 3pm feeding came and I changed his diaper and his outfit because he had spit up, he woke up. He was really awake and showing those signs that he was ready to eat so we got him a bottle. I could not believe how well he did! I was teary eyed watching him because I was completely amazed. Age wise this is usually when they take bottles, but it was his first real bottle and he paced himself, he stopped to take breaths, he tolerated it with no gagging or increased work of breathing, no dropping his oxygen-it was perfect! He took 16ml which is almost half of his feeding. That was actually in 15-20 minutes and he has 30 minutes to eat. I didn't want to push it though because he started pushing it out of his mouth and didn't seem interested anymore. They can get an aversion if you try to force it when they're not ready. Now this isn't to say that every feeding will be like this and they said sometimes they regress a little before they fully get the hang of it, but just to see him do so well made me so happy. 

After he has mastered bottles, he will still need a car seat check and circumcision before discharge. We also have to take their CPR class. I am CPR certified, but they said it's still good to take their class specific to infants.

It's still hard to believe this sweet little boy is coming home with us. Bringing a baby home has been a dream for 5 1/2 years since my miscarriage. I look at this precious little boy and all I can think about is how much we love him and how afraid I am that I might lose him. 

Thursday, December 18, 2014

Happy One Month Baby Brooks!

Baby Brooks is one month today! He is also 35 weeks gestation. I felt a little guilty that I didn't have those little stickers you put on onesies for each month. But I try not to be too hard on myself since there is so much going on. Maybe next month. For this month, Gift to the Ladies works just as well:)

Little Brooks got mail in the NICU today:) It was from a friend from high school and fellow preemie mom-thank you Amanda! His nurse said she had never had a baby get mail:)

A sneak peak:)

Brooks is just a smidge under 4lb 5oz. He has been gaining (and good amounts) every day! Remember I was worried about him having to keep up his temp and burning calories and he is a rock star!

He has been so sleepy when I've been there lately. I did a little taste testing with him yesterday, but he zonked out shortly after we started. I did have to leave early to get Brennan from school so I thought he may wake more at 3pm when I wasn't there.

Today, he woke for a little bit when I got there, but not enough to do any taste testing. Then I gave him a bath before his next feeding and since that is a lot for him I didn't want to push it. I got him all snuggled and comfy to nap after. I like him to be settled when I leave. I won't leave when he is awake because I like to have that bonding time with him and even if he is just a little squirmy I can't leave. I like to think I tuck him in until the next time I get there;)

When I talked to the attending yesterday (who is actually not his regular doctor) he said as he gets bigger the flow from the cannula won't do as much for him as when he was smaller. And let's face it, he's growing by leaps and bounds right now! I have also noticed him being more comfortable breathing the last couple of days. He does still reflux, I can always tell when he does, not just by his oxygen sats, but he gets squirmy. Although he has dropped his oxygen saturation a few times during reflux episodes, he has been recovering without any heart rate drops (or severe apnea that requires stimulation) which is an improvement. He hasn't had an apnea/bradycardia episode since Monday night I believe. Soooo I'm thinking maybe the caffeine and cannula will be gone soon-hope I'm not speaking too soon!

So our goals are to get rid of the cannula and not be such a sleepy head so we can wake up and take bottles!

Tuesday, December 16, 2014


I wanted to post a quick update about Brooks today. He is 4 weeks old today! He was 4lb 2oz  today (or technically 9pm last night) so he was up 40 grams-wohoo! He doesn't always gain every day, which is fine because they really look at the trend over a week. The last week he did average a weight gain of 30 grams/day which is what they consider ideal. Since he hit the 4lb mark, he actually got to have the top of his isolette popped, so it's high in the air and isn't providing any heat for him. He has to stay bundled and keep a hat on all the time. After 48hrs of proving he can keep his temp up they move him to a big boy bed:)

I talked to the Nurse Practitioner for a long time yesterday. I was a little worried that his weight gain may fall behind with having to keep his own temp up. We don't want any set backs! She just said they watch his weights and if he falls behind they put the top back down. So far, he has done good with keeping his temp up and it seems like he will continue to gain:)

We talked about the feedings and I explained that they tried to switch him to 30 minutes this weekend and he didn't tolerate it. She agreed that there was no need to stress him right now so she will make sure they stay the same for now.

I also asked her about a head ultrasound. They do these to check for hemorrhage since the brain is not developed fully. He did have one at 2 days old since he wasn't really responding the way they expected him to and that one was normal. I only asked because I wasn't sure if there was a protocol for checking them throughout their stay. There really isn't, it just depends on the baby and how they have done over the course of their stay. Since he had a rough start, they decided to do one now (one month is typical for the 2nd one). He had it done today and it was normal-yay!

He still has some increased work of breathing at times. It was seeming a little better and he had an episode today while I was holding him:( Nothing had to be done about it, but I just hate to see him uncomfortable at all. Anyway, she said those times that he has those shows her that he isn't ready to come off of the 1L flow yet so that's staying on for now.

I did do some taste testing with him today. I just dipped his pacifier in formula and put it in his mouth. He did well with it, but there was a new baby that was admitted and it was very noisy so it was a lot of stimulation for him so we just tried it a few times.

He had lots of smiles today:)  His feeding tube tape looks icky from his spit ups, but there will probably be more (a big one on me today) and it's not fun getting the tape taken off so I haven't pushed for it to be changed.

I posted this on facebook-it looks like he praying, probably to come home soon!

He is really so so sweet. I love snuggling him and I miss him so much when I'm away. 

Monday, December 15, 2014

A Day in the life of a Preemie

I start my day with my medical team, consisting of doctors, nurse practitioners and my nurse, making rounds and talking about my progress. Then they decide if there will be any changes to my care. In the beginning, changes were made daily to my respiratory support and feedings, but lately things have pretty much stayed the same and I'm just waiting to grow big and strong so I can keep moving forward. I get my feedings at 9-12-3-6 around the clock-I am taking a high calorie formula made just for little guys like me. I am getting a little over an ounce at each feeding. As I gain weight, the amount increases. Before my feeding I get my diaper changed and my temperature checked, when mommy is here she does that:) The nurse checks the placement of the feeding tube in my nose that goes to my belly to make sure it's in the right spot. Every 8 hours my pulse ox probe is changed to a different place on me and my blood pressure is taken.

I also have an occupational therapist that comes a few times per week to give me a massage-as most people do, I really like this. Sometimes mommy massages me too to help calm me down. That's probably one of the hardest parts about being a preemie right now is even changing my diaper is a lot of stimulation. I stretch my arms and legs out, it's hard for me to control my movements and sometimes this upsets me. When mommy changes me she keeps my arms secure in my rue (a rue is this really comfy sleep sack that keeps me bundled up like I was when I was in my mommy's belly). Keeping my arms secure helps me to relax while mommy changes me-sometimes I even sleep through it. I'm also turned in different positions with my feedings/diaper changes-my favorite is my tummy:)

My isolette is in a room with 5-8 other babies and there are 2-3 nurses in the room to take care of us. I usually stay in my isolette unless mommy or daddy come to hold me. Here is what my bedside looks like.

A picture my big brother, Brennan, drew for me:)

I also have a picture of Brennan in my isolette:)

 It used to be harder to get me out, especially when I had the tube in my mouth to help me breathe. Now mommy can get me out on her own, but I still have the oxygen tubing, feeding tube, three leads (to pick up heart rate and respiratory rate), pulse ox probe (for my oxygen level), and temperature probe. I have to wear a hat and be bundled up to keep me warm. I love to be held, when I'm awake I just stare at mommy while she talks to me and sings to me. I'm really starting to focus more on her face too-she really loves that!

Sometimes I just sleep when mommy is holding me because it's pretty comfy:)

At 9pm I get weighed-this is a very important time! Everyone wants to know how much I've gained! I'm getting pretty big-4lbs 1oz now! If it's bath day, I get a bath at this time too. Mommy brings in clean blankets and clothes for me-some are mine and some are my big brothers. I've gotten lots of new snuggly sleepers since I was born:)

Today, I had my eye exam. My nurse said I did really well and that it didn't take long. I'm glad that's not part of my daily routine though! They said my eyes look immature which is to be expected and I get another exam in 2 weeks. Mommy was happy to hear that!

Sunday, December 14, 2014

Welcome to the world Baby Brooks

Wow, it's been forever since I've blogged. And boy do we have some catching up to do (which couldn't possibly be done in one post). I had intended to blog throughout my pregnancy, but that didn't happen. I also wanted to blog sooner about this little man, I can't make any promises about keeping this up, but I am going to try.

So for starters for those of you who don't know, we found out I was pregnant with this sweet little gem on our 8th wedding anniversary this year, May 13th.

His name is Brooks William. Is he not the sweetest?! He is truly our little miracle.  He was born on November 18th at 30 weeks and 5 days (Birth story later). He was 2lb 13.8oz at birth and has gained 1lb since birth so he is 3lb 14oz. He is still in the NICU though:( He is doing good, but he had a rough start. He was intubated at birth so he was on a ventilator from the get-go. They kept having to adjust his settings higher, he received surfactant three times (which helps the lungs to expand) and that didn't help like they expected either. They tried a different ventilator, an oscillator, to see if that would help. Well, I was pretty hysterical when they told me that. That was the "last resort" ventilator they used for Reese before she died so all I could think was that we were headed in the same direction. Once I explained that to them, they reassured me that they were only using it as a different type to see if he would respond better. It didn't ease my fears that I might lose my baby again, but helped to know that it wasn't because he was requiring that much support. He ended up not tolerating it and actually required medication to calm him (he was pulling his tubes out and got himself the nickname "maniac") so they switched him to another type of ventilator which he ended up staying on. He has never required a lot of oxygen, he just doesn't expand his lungs enough. Thankfully, when he was 4 days old he was able to be extubated (no tube to help him breathe) and placed on non-invasive respiratory support to help put some of the pressure into his lungs to help them expand. He was then able to be weaned off of that when he was and he now he has the nasal cannula for a high humidity flow to help expand his lungs. He started on 4L and weaned down to 1L which is what he is on now. He mostly just has issues with dropping his oxygen during or after feeding times (when his belly is full, he spits up or refluxes). Lately he has had apneic (stops breathing) and bradycardia spells (heart rate drops) with his feeds because he is having some reflux. It makes this mommy very anxious. Even though I'm a nurse, no one wants to see their baby stop breathing and turn blue, especially when you have lost two babies. I don't care how common it is for preemies. I generally plan to hold him during his feeds which is when it has been happening so I've changed my plan and started holding him about an hour after his feeds. That seemed to help today. He has had minimal episodes when he is in the isolette, but even when he does he seems to recover more on his own than when I'm holding him. We actually have to stimulate him to start breathing again (rub his chest, re-position him, flick his foot) when he has had the episodes and I am holding him. He is on caffeine to help prevent these episodes, but his are caused by reflux more so than from brain immaturity. They still won't stop the caffeine for a while yet. The other issue he is having is with spit ups. His feeds run on a pump for 45 minutes and they have been trying to cut back to 30 minutes, which they know I don't want. He doesn't tolerate it. They want him to be at 30 minutes because when he starts taking more bottles he will only have 30 minutes to take it if he doesn't tire out first so they want to get him ready. He is no where near taking a bottle like that so to me there is no reason to push it. They still tried to change him to 30 minutes today and I didn't know until I got there and he had 2 feeds like that. I knew he wasn't ready and of course the nurse said he had spit ups with both feeds and then a projectile one when we were there. I know a spit up doesn't seem like a big deal-that's what babies do. But when you have a preemie who stresses out (high heart rate or low oxygen/low heart rate) when it happens, it's a big deal. So I made them change it back. His regular Nurse Practitioner wasn't there this weekend, but she will be tomorrow and we will be having a little discussion about it. He was on the ICU team originally and now he is on the transition team to "transition" them home. Age wise he should be starting to wean off the caffeine, starting to take bottles, etc but he is taking a little longer and is just not ready.

Premature babies are at risk for retinopathy of prematurity (ROP) so they are doing an eye exam tomorrow. Brennan had this done once after he was discharged and it was horrible. I had no idea what to expect and it was like something out of an exorcist movie. I am dreading this for Brooks tomorrow:( It's probably not as painful as it looks, but I definitely don't want to see it, but I want to be there to comfort him after. I know I am going to be so emotional tomorrow (which isn't too different from other days honestly) They do use numbing drops, but they said the medicine they get can cause those apnea/heart rate drops-we don't need anymore of those so let's hope it doesn't cause them for Brooks and that he has a normal eye exam. Depending on the results they do the exam every 1-2 weeks until they are full term and the vessels are done developing.

The famous question "When does he get to come home?" I wish I knew. It just depends on how he does. He definitely can't be doing the above business with eating when he comes home. They usually use the due date as a general estimate. His was January 23rd. I didn't think it would be quite that long, but with the way he is progressing at the moment I do think it will be close to that. He gets all of his feeds through the tube in his nose. So we have to be taking all bottles to go home. This is about the time to start and I have tried three times with bottles because he does show typical signs that he is ready (awake and alert at feeding time, rooting, putting his fists in his mouth, taking a pacifier). There were a couple of days he was working a little harder to breathe so I didn't push it at all, just basically put the nipple in his mouth. He had an oxygen saturation drop with one bottle after taking about 2ml. It's a lot for preemies to learn to suck, swallow and breathe plus it's a lot of work! So he just isn't quite ready. He also needs to be able to keep his temperature up on his own to be discharged, which most likely by the time he has mastered everything else won't be an issue. At this point he is in the isolette, they want him to grow and don't want him expending energy to keep his temperature up. He also has to gain weight of course and he has been doing well with that. They want him to gain an average of 30gm per day and he actually did just that over the last week which is great. 

I love this little boy so much I can hardly stand it. I hate being away from him and I am just so ready to bring him home. It is quite the challenge to balance life at home with Brennan and trying to keep things somewhat normal for him while feeling like I have enough time with Brooks. Well, there is never enough time, but we are doing what we have to right now to make it work. I am thankful that I am able to go to the hospital every day. Since Brennan is in school I can spend most of the day there and we are lucky to have family to pick Brennan up from school so I don't have to rush back (and he likes this time with family too). I am home for dinner, homework, bedtime. Those are the things that are important to keep consistent for Brennan. Plus, it is extremely important to him that I tuck him in at night. 

So welcome our little Brooks and send lots of thoughts and prayers his way to get big and strong and come home soon.