Saturday, November 19, 2011

Baby Steps

Slowly but surely the babies have been making progress in the NICU the last couple weeks. We have gotten to the point where there is one nurse for all three babies instead of one nurse for each baby which means they are much more stable now than before. We were also able to pick a few primary nurses we like who will always work with the babies when they are scheduled up until they are discharged. This way it is not a new nurse every day. We feel like they know the babies better and its much more comfortable for us to talk to them as well.

I am so happy to say that Mickey had his breathing tube removed this week and he is doing great. I guess he just needed a little more time. Right now he has the Cpap machine which inflates his lungs when he breathes but at least he is doing the breathing. The next step would be just a high flow nasal cannula kind of like what Jolynne has. We are thinking maybe another week for that. Mickey is 3 pounds 15 ounces, by tomorrow, I suspect he will be 4 pounds. Every day I see him, he looks bigger to me. He is now a full pound or more bigger than Jolynne. He is very strong and is known for trying to pull the tubes out and wires out and break free from his little nest. I think he is a little incredible hulk! He has quite the temper and knows how to get attention. He even has the nurses fighting over who gets to take care of him.

Jolynne is doing well too. Her biggest issue at the moment is weight gain. She is 2 pounds 14 ounces and she lost some weight again last night. The problem is because her intestines end at her belly now, they don't digest the food all the way and she does not absorb all the nutrients from the food she needs to. The are trying to mix some special formula for her that is easier to digest and give her Imodium that is supposed to help. I am a little nervous about the Imodium because the doctors seemed hesitant to use it and only as a last resort. I sure hope it helps though and she starts to gain weight because they cannot do that 2nd surgery until she gets bigger and that determines when she will be able to come home too. On a positive note, everything else looks great for her. She had a Physical Therapist evaluation yesterday and the therapist was blown away. They said they had never seen a 33 weeker so alert and put together like Jolynne, especially since she had undergone such a major surgery. When all you hear every day is all the risks and possible complications and set backs, it was really nice for Tommy and I to hear that. They are working on getting her off that oxygen too. Any day now, maybe today, I plan to walk in and its off.

Georgia is moving right along as usual. She is off the oxygen so there is no longer anything sticking up her nose. She is 3 pounds 5 ounces and gaining about an ounce a day. Its weird because Mickey is gaining like 2-3 ounces a day and the girls are not. But the only tube she has left is her feeding tube in her nose, and since she is almost ready to nipple feed, within the next couple days, I don't think she will even have that feeding tube for much longer. We can put clothes on her now which is kind of fun. Its nice to see her without all the wires and tubes and sensors on her body and its so much easier to pick her up and hold her without worrying about disconnecting something important or pulling an IV out.

I would say all three of them are much more alert now, even Mickey. They have moments where they just stare up at us and look all around and their eyes are so big and bright. They melt our hearts really. I am becoming so attached to all of them but I am also getting a taste of what it will be like when they get home. Now, as it is, if more than one is awake and looking around I don't know who to go to, and then another one will start crying or need a diaper changed but I don't want to leave the other one. It really will be like a juggling act. It already is. At least when they come home I can have them all next to each other and look at them at the same time. When we are getting ready to leave at the end of the day, one or two will wake up and then I feel stuck, how can I leave when they are looking up at me like that? Its very hard to walk out the door some days. The doctors have jokingly mentioned that they should start paying me because I am there so much and helping the nurses out all day, but I mean, really, where else would I be? In all honesty though, I am very lucky that my work and my benefits allow me to be there, because I know a lot of new moms probably don't have that option. I am very fortunate in that regard. I don't know how I could be away from my babies right now when they are so fragile. They need me.

Other than that we are looking forward to a week spent with family. My Aunt and my cousins will be here until Wednesday and then the rest of the family will be here for Thanksgiving. We have so much to be thankful for this year, so much! We will be eating Thanksgiving dinner out this year, which will be weird but we dont want to worry about cooking and cleaning so we can get up to the hospital. All that matters anyway is that we are all together.

Christmas is now right around the corner too and although I don't have as much time to devote to shopping and decorating this year, I am still excited. And a little birdie told me that Santa Claus might be visiting the NICU in a couple weeks. Cant wait!



Mickey - These are all before the tube was taken out

Wednesday, November 9, 2011

Two Weeks Old - Just breathe

Today our babies are two weeks old, and tomorrow I would have been 32 weeks pregnant, which was my original goal. As slowly as things seem to progress in the NICU some days, the last two weeks have gone by in a flash. I am at the NICU most of the day and afternoon. While I am there they keep me busy, changing diapers, checking temperatures, cleaning faces and holding my precious babies. When I hold them it is for at least an hour because it is very stressful to move them from their isolates, so once they get comfortable with me, we don't want to move them again for awhile so we don't stress them out. That's three hours of my day right there holding them. It is what I live for these days. But by the time I get home, I am exhausted. Today I decided I would try to drive for the first time since the surgery, and I went into the NICU earlier this morning so I could leave in the afternoon to get some stuff done and come back in the evening. However, I ended up sleeping all afternoon, and accomplishing nothing. The driving thing didn't work out too well either. I was a little crampy afterwards so I think I will have Tommy drive me again tomorrow. Its hard to remember I am still recovering myself but some days I definitely feel it. I don't think  I have ever been so tired.

On an emotional note, its hard to see your babies hooked up to so many monitors and machines and not be able to take them home with you at the end of the day. Also, when you see one struggling, it is overwhelming. As happy as I am to have them here, I still feel as helpless as I did when I was pregnant and emotionally it is very exhausting as well.

Anyway, its safe to say we are still learning how to balance our time between the NICU and the rest of the world but we are doing our best and will be so happy when the NICU days are a thing of the past.

Now onto the babies. At two weeks old Georgia is now 2 pounds, 15 ounces, almost 3 pounds. She is still doing extremely well. They are weaning her off her nasal cannula that gives her oxygen and hopefully she wont need it in a few days. She is almost up to her full feeding, which means they can take her off the IV fluids very soon. she is growing steadily, very alert and just loves to look around and check everything out.

Jolynne is doing great as well, and recovering wonderfully from her first surgery. She has a colostomy bag on her belly until the next surgery. She is 2 pounds 9 ounces. Her growth is a little slower because they are feeding her much smaller amounts at a much slower rate as to not take any chances with the progress she has made in her belly. Other than that she is tolerating her food well and I am confidant she will catch up to her sister soon. She is also being weaned off the oxygen and should soon be without the nasal cannula. Both her and Georgia love their pacifiers and have developed their sucking skills much earlier than most babies their age. This means in another week or two hopefully they can start eating from a bottle instead of a feeding tube.

Our biggest concern right now is our boy, Mickey. He is now 3 pounds, 2 ounces. He was doing well, (so it seemed) and they took him off the ventilator (breathing tube) last Friday, only to put it back in 36 hours later. He was just not able to breathe on his own without working super hard. It was very hard to watch. They still say he has probable meningitis, maybe some lung disease (but they are not sure) and today they were concerned about his belly. Every day it seems to be something else with him they are "watching". I do feel he is in good hands and they are keeping a close eye on all the possibilities but I also don't think they really know what is wrong. Some days they tell us, he is just a boy and boys develop slower than girls. Tommy is really tired of this explanation, and other days they seem to think its something more. It leaves Tommy and I unsure what to believe. We are trying to be positive that he will come around in his own time but its so hard to see him struggling while his sisters are doing so well. Right now I am just trying to be patient for him and give him the time he needs. I just want my little boy to get better!
After two weeks, even though our babies are in the NICU, Tommy and I are still in disbelief some days we have three beautiful babies. I feel so blessed and so in awe of them. They are my three little miracles and despite all the frustrations and worry, it will never take away the joy in my heart.

Tommy and I want to thank each and every one of you for all your comments, phone calls, messages, texts and emails. We do enjoy hearing from you and your support means so much to us. We are also sorry if we do not respond or get back to you. Its not that we don't appreciate you, its just that once the day is done, so are we, we often go to bed without any down time because it is non stop all day and I still have not been able to find the time to interview for nannies or get things ready for the babies. I cant even get my laundry done :-).

I ask again for your prayers for all three that they continue to take steps forward and grow a get stronger, and especially for little Mickey right now as he struggles to overcome his breathing issues so that he doesn't have to rely on a breathing tube.

Here are some more pictures of our angels!




Friday, November 4, 2011

Our Birth Story - A Father's Perspective

Wednesday October 26, 2011 started out like many other days have during Kara’s pregnancy. I woke up early to take care of Maddox; Kara got up and I made her some breakfast. There were a few differences, though. Pepper had been with the Vet – Dr. Howard – the previous night because he had battled seizures the day before. Kara was up earlier than normal and put on makeup. She was very calm and relaxed for the appointment. It was a growth ultrasound and all we wanted to know was how much the babies had grown. Was it 3 pounds? A little more? A little less? Probably the biggest thing on our mind was getting Pepper back from the Vet and making sure he was ok.

We went to the Vet before heading off to our appointment because we needed to drop off Pepper’s medication. We told them that we’d see them later and we were off. We reached the doctor’s office shortly after. We had been to that office seemingly a thousand times before that day. Each time seemed like the previous. We’d wait in the waiting area for 10-20 minutes, go back to a tiny room, get an ultrasound, meet with 1-2 doctors, schedule the next appointment, and go home. So many people come in and out of that office seemingly all day. Very nice people there, though. But I can’t say I’m going to miss going there every week.

As soon as they called Kara’s name, I smiled and laughed at her. The lady working the ultrasound was not one of Kara’s favorites. While she was very nice to us, she also seemed to always have difficulty finding the fluid levels or keeping track of which baby she was examining on the screen. Kara flashed me a look. I knew that look pretty well. It was her “I’m not happy but I can’t do anything about it” face. Sure enough once we got started, the tech looked uneasy at the screen. I rolled my eyes to myself, thinking she was just having her usual problems. My only concern at this point was our appointment was going to take an extra hour. Eventually she got the necessary measurements. When we asked how much Georgia weighed, she said 2 pounds, 4 ounces. Kara and I looked at each other confused. “2 pounds, 4 ounces? She was 1 pound, 12 ounces 4 weeks ago?” Again, my initial thought was the ultrasound tech was just not getting things right. “The doctor will figure out what is going on” I thought to myself. Eventually a doctor showed up and started looking at the same images. Except this time there was something else they were reviewing: cord blood flow. I really had no idea what right looked like; I just kept waiting for one of them to reassure us that things were fine. Turns out our day was just starting…

During our scheduled time with the doctor, she told us that they were concerned that Georgia was not gaining enough weight and that her cord blood flow was reversing. She instructed us that we would go to Banner Desert for further observation. We quickly left the premises and headed to Banner Desert. Once we got to the Triage, we were immediately instructed to go to Admitting/Registration – another wrinkle. Now our thoughts were they were going to admit Kara to the hospital and monitor her. I wasn’t crazy about the idea because just a week ago were told we may deliver as late as December 1st – 35 weeks. 5 weeks in the hospital? Kara was going to be miserable. Add on the challenges of figuring out the dog situation and it was a little stressful. Again we went to an ultrasound where the tech reviewed the same things: Georgia’s measurements and her cord flow. The tech did not say much, only that she would share the information with Dr. Spence. Dr. Spence was someone Kara and I were familiar with. She had actually figured out the sex of the babies just 4 months earlier. But until Dr. Spence could review the ultrasounds…we waited…and waited…and waited. Apparently Dr. Spence was busy with other patients and some kind of meeting. At around 1:30pm they let Kara know she could eat something. It had been 6 hours since we ate anything. 45 minutes later Kara was able to eat a hamburger. In that time we were told that we may or may not be getting admitted to the hospital. So are we going home anytime soon?

Around 3:15pm Dr. Spence finally showed up to articulate her concerns. The cord blood flow on Georgia and her minimal growth meant our week was about change. “We’re either going to do a C-Section later tonight or tomorrow morning. Tomorrow would be preferable because we can get the right team in place right at the start of the day.” Our minds were racing. “I have to get our dog from the Vet before it closes. Do I have to time to get him and drop him off?” Dr. Spence said I should do that now and we’d have a decision made shortly after I got back. Off I went, heading back towards the house. I tried to call my dad and Mary Lou from the van when Kara called me. “We’re doing the C-Section at 5pm. You need to get back here as soon as possible.” 5pm? I had just left and the decision was still up in the air. “What the hell changed in the last five minutes?” Apparently there was an opening at 5pm and Dr. Spence wasn’t going to wait. I drove as quickly as I could to get Pepper, dropped him off at home, grabbed some items, and headed back to the hospital. I texted my best friend Brett to see if he’d get over to the house to keep an eye on Pepper. I also reached my dad and Mary Lou and told them that their grandchildren were coming tonight. Shock, disbelief, excitement, panic, anxiety…how many thoughts/emotions can run through someone’s head in such a short amount of time?

When I got back to the hospital Kara was getting prepped for the surgery. I was told to put on a hospital gown. I learned that they design the hospital gowns as if every man is as large as Shaquille O’Neal. After finally tightening them the point where they wouldn’t come off I went back to see Kara. Eventually they led us to the room where the C-Section would be performed. I was asked to wait outside while they prepped Kara. I was only out in the hallway for about 15 minutes, but in that time I saw 12 nurses walk by (all of whom presumably knowing what I was going through). I just paced around the area like I do when I’m stressed or anxious about something. Kara makes fun of me because I do that when the Steelers are playing.

Once they let me in I asked Kara, “Are you ready to be a mom?” I smiled for her. I knew she was dealing with a hell of a lot more than I was and I did my best to be calm and reassuring about everything. I truly wasn’t nervous about the procedure or the health of the babies. I just hated the sitting around and waiting, even if it was only a few minutes. Once they got started, though, things happened quickly. I was not allowed beyond this large sheet, so everything was happening behind it. Before I even registered we were really starting, we heard a baby cry – it was Georgia! She was born at 5:27pm. They briefly showed us to her and she was whisked away to her team of doctors/nurses. Mickey came next. He was born at 5:28pm. Mickey didn’t seem very happy to be here, to be quite honest. He was in the most comfortable position inside Kara, so this whole experience probably pissed him off. When they brought him over to see us, he had this angry look on his face, almost saying to us “What is your problem? I was just fine in there!” Jolynne was born at 5:29pm. Each was being tended to by a team of professionals. I was asked to cut Mickey’s cord and as soon as each one was ready they were brought upstairs to the NICU. I followed Jolynne out as the third and final baby to reach the NICU.

The NICU is really something to see. The babies are in their own little cocoons. They have monitors telling the team everything from heart rate, oxygen levels, and everything else in between. I was allowed to roam free throughout the process, though I still felt weird being up there. “Am I in the way?” “Do you need me to come back?” “Are they ok?” Everyone was doing fine and nobody was bothered by my presence.

At some point after things calmed down, I was able to sit and look at each of my children without disruption. I’m going to try to articulate that feeling I had that night (and still have since). I have been through stressful situations before. I have experienced plenty in my time on this earth. I have read all about becoming a parent and what that is like. But I wasn’t completely prepared for that feeling. I am in awe of those babies. I can’t imagine my life without them now. There are moments in our lives and we all know them when they happen that change you. I have even had a few of those moments in my lifetime. To me, the entire world looked different; smelled different; and felt different after my children were born. And I wouldn’t have it any other way.

~Tommy Comer

Thursday, November 3, 2011

NICU = Roller Coaster

The NICU is just as I was told it would be  - a roller coaster ride! There are some days (most days) they all seem to be doing well, and then out of nowhere, we get bad news! Those days are very hard. You want so badly for your babies to keep taking steps forward, the sooner they do, the sooner they come home, but being so small, its not that easy, they are doing the best they can.

The good news is they are all stable and on the right track now. I will update you on each of them, starting with Jolynne's surgery. At first she was doing great, breathing on her own, etc. Then on Saturday, the nurses noticed her belly was a little distended and swollen. They did and x ray and found some things outside of her intestine that shouldn't be there, meaning there was a hole in her intestine and they needed to do surgery right away. We were told there is possibility being so little she will not make it through the surgery, but if she doesn't have the surgery, she will likely pass away within hours. Ummm...this was probably the most difficult moment of my life. And because of all the meds I was on and being sick myself, I had no way to control my emotions. I was a mess. Period. Tommy and I both were having a really hard time. It was longest two hours EVER! Obviously we decided to do the surgery, where they would remove the section of the intestine where the hole was (hopefully it was not big and there was only one, something they cannot tell until they get in there). Our baby, the fighter that she is, survived the surgery and did really well. We breathed a sigh of relief but knew it would be a difficult road ahead. Luckily it was a small piece and so they removed it, but because she is so small, they cannot just sew the other intestine back together or it will grow closed and nothing can get through there so she has two pieces coming out of her stomach (a stoma). It is not as bad as it sounds. In 6-8 weeks, when she is bigger, they will go back in and reconnect the intestine, and then she will have to recover from that surgery as well.

Joynne is doing well considering everything she has been through. They took her off the continuous pain meds yesterday and hopefully she will be back off the breathing tube today or tomorrow. We are fortunate at this time, she does not have too many other issues holding her back, so as soon as she heals, and starts to grow, we are moving in the right direction.

Our little Mickey as it turns out, has meningitis (fluid around the brain) or so they think. All his blood cultures were negative but they did a spinal tap and the white blood cells were elevated which I guess is an indication of meningitis. They say he is in the gray area, where he is not having any seizures (thank god) and his test was not alarmingly positive where they can say without out a doubt that's what it is, but there is enough evidence to suggest that is what it is and because we know he was sick with something it makes the most sense to the doctors, but there is a small chance he does not have it. The doctors think because we caught it early and started him on several antibiotics to treat several different things, that may be why it is not showing in the blood and hopefully he will continue to improve. He is getting better. The biggest concern here is that it increases his risk for disability or developmental issues later in life, but being premature does that anyway, so we will never know. It is still a small chance, maybe 20-30% this will be an issue, but bottom line, he will be ok now, we need to just get through today and worry about later, later. Other wise, his lungs are getting better and so is his stomach so he is also moving in the right direction, slowly but surely. Baby Steps.

Georgia as I have mentioned continues to show off :-) Which is fine with us. She is doing so well. She is very alert and will lay on her back and look around and suck on the pacifier all by herself and move her arms and legs around and is actually acting a few weeks older than she is, so good for her! I am going to post some pics of Georgia and Mickey below. Jolynne is harder to get good pics of because of all the cords and tubes. After she gets her breathing tube removed, which is hopefully today, I will get some good shots of her as well.

Right now Tommy and I are going back and forth to the NICU at least twice a day for a couple hours at a time. Today I am having him drop me off so I can just be there. Going back and forth is very tiring, especially as I am still recovering from the surgery. I still cant drive so I have to go when Tommy can go, based on his work schedule. Next week, it will hopefully be easier once I can drive. While I am there we get to help change diapers, take temperatures, clean faces, etc. and I can try to hold them depending on what kind of day it is. I can talk to them and hold their hand and let them know that mommy's there and they are not alone.

Every day we leave the NICU

Here is Mickey...

Here is Georgia...