Noakes' Nest: We Want a Chunky Baby!

Well evidently the cardiologist didn't scare Caroline enough because we are currently at the hospital and Caroline now has an NG feeding tube.

On Tuesday we had an 8:30am cardiologist appointment. We went through the normal procedure of a weight check, length check, EKG, pulse ox, and temperature. When the cardiologist came in he said well we haven't gained weight again. I think its time for the tube. I had no idea what he was saying at first. Then I realized, oh great a feeding tube, the hospital, yay. So Caroline and I went home, I packed our bags, and we headed off to the hospital. We had a choice of hospitals in the area so I chose St. Mary's, where Caroline and Emily were delivered.

Philip was in Baltimore again this week but he was able to take a train back to Richmond Tuesday night. I also asked my mother-in-law to come be with me. My parents offered to come too but I told them no for now. I figure we will need to rotate the support system over the coming weeks/months.

We checked into the hospital around lunch time Tuesday. We started by answering lots of questions and getting her vitals monitored. She has a hospital pediatrician, medical students, nutritionist, GI specialist, nurses, techs, her normal pediatrician, and her normal cardiologist. We've had to repeat her medical history/feeding history to all of them so I will repeat it here too so we are all on the same page :)

Caroline was born at 6 pounds 7 ounces. As all babies do she lost about 10 ounces after birth while at the hospital. She was able to surpass her original birth weight by 11 days old which was great. So at 11 days old she weighed about 6 pounds 11 ounces. From April 11 (11 days old) to May 18 Caroline gained ZERO weight. Over those six weeks we put her on two medicines for her heart and slowly upped them as the weeks progressed. We clothed her in socks, a onesie, footie pjs, and a hat 24/7 so she wouldn't burn calories trying to regulate her body temperature. We also switched her feeding around. For the first month or so I nursed her. Then we added 2 formula bottles a day. Then we alternated nursing and formula bottles. On May 12th we decided to switch her to an all formula diet. This all formula diet was also a formula that had higher calories in it than normal formula. The combination of a high calorie all formula diet, her layered clothing, and her 2 medicines made it so when we did her weight check on May 18th she weighed 7 pounds 6 ounces. It took her six weeks but she finally gained weight! We were given permission to stop the layered clothing but continued with the medicines and the calorie rich formula. Then on June 1 she had got up to 8 pounds! We thought we were rockin' and rollin' in the weight department. Well on Tuesday when I took her in to the cardiologist she had gained no weight again :( Basically we have exhausted all non invasive methods to help her gain weight so the cardiologist decided that we needed to admit her to the hospital to get an NG tube (Nasogastric feeding tube) to help her gain weight. An NG tube is a tube that goes through the nose, down the throat, and directly into the stomach.

Why is she not gaining weight?
The hardest thing for a baby to do is to eat. Caroline gets worn out during her feedings and doesn't eat as much as she needs too. It is extra hard for her because of the hole in her heart. She is burning all the calories she does take in just to stay alive. The doctor told us that she needs to eat more than a normal baby her age because she burns her calories so quickly. Right now she is eating less than a normal baby her age.

What are we doing to help her gain weight?
We've changed "the plan" about a million times while here at the hospital. Here is "the plan" as of 4pm on 6/14. Caroline is getting fed her high calorie formula during the day through a bottle. We are starting out with about 2 oz every 3 hours 4 times a day. Then at night she is having a slow continuous drip. So from 7pm to 7am Caroline's tube will be hooked up to a bag (looks like a IV bag) that has her food in it. She will be getting continually fed all night long through the tube. She will be getting 30mL an hour for 12 hours or about 1 oz an hour for 12 hours. The doctors want her to get a total of 600mL a day. In a few weeks we will increase this. We are continuing with bottle feeds during the day in order to make this as normal as possible and to make sure she remembers how to suck and swallow so we won't have to reteach her later.

How are all of us doing?
Philip and I are doing well. We knew there was a chance of this so we weren't taken totally by surprise. It was hard to have Phil in Baltimore on Tuesday. I was so happy (and so was he) when he got here late Tuesday night. He has been able to work in his company's office the past couple of days instead of the client in Baltimore. We were both upset at first about the tube but are just rolling with it now. We've gotten used to that this past year ;) I've stayed at the hospital every night. Phil and his mom have stayed at our house. They both offered to stay with me or for me but I just don't want to leave her. I finally left the hospital for a bit Thursday night for dinner with Phil's mom while Phil stayed with Caroline.

Caroline is doing okay. When we first got to the hospital on Tuesday she was soooooo happy. She was playing with her toys, smiling, and loving the attention. When they put the tube in on Tuesday evening she was just laying there smiling and laughing at me. It was so sad because she went from being so happy to screaming and I mean screaming. It was horrible. I just stood there singing lullabies to her, telling her how proud we are of her, and how proud she should be of herself. I also had to help hold her down :( I've never heard my baby cry like she did when they put that tube in. It took me awhile to calm her down afterward. We had some difficulty with that first tube. The machine kept saying that it was blocked. They had to re-adjust the line multiple times throughout the night because they couldn't figure out what was wrong. Every time they did that she started a new batch of screaming. They also had to use a cathader to get a urine sample. Luckily she didn't cry for that! They also wanted to run bloodwork. They had to stick her 5 times because they couldn't get any blood. Over the course of Tuesday night they stuck her 4 times, cathed her, and readjusted her tube (probably 2-4 times). It felt like we were waking her up every hour from 8pm until 3 am. Then at 3am they decided to put in a new NG tube. By that time I couldn't take it anymore. I had held her down over and over again and tried to keep her calm as the nursing staff did what they needed to do. I sat down in the chair and put my head in my hands and tried to keep from crying. I knew if I cried it would just make things worse for Caroline. I told the nurses that I wasn't going to stay while they took out the bad NG tube and put in a new one. I just couldn't do it anymore. I stood over Caroline crying a little and apologizing to her for leaving while they dealt with the tube. I almost changed my mind and stayed. I felt sooooooo guilty for leaving her. In the end I knew what was best for my exhausted emotions was to go for a walk. When I came back they had just finished taping the tube down so I picked her up and snuggled her for a long time. Wednesday was easier because we didn't have to deal with a problematic tube. They did have to stick her one last time to get blood (they brought in an "expert" this time). Thursday has been the best day so far. She is starting to get used to the tube. The saddest thing is when she wakes up in the morning. She used to be my happy, smiling baby (see pictures) but now she wakes up crying, coughing, and sneezing--trying to get used to that darn tube. We have started getting more smiles which make us feel better about the whole situation.

2 weeks ago this is what greeted me when I went to do her morning feeding.

The staff at St. Mary's has been wonderful. We have liked every experience we've had here between Emily's delivery, Caroline's birth, and this we feel like we know the place pretty well. It is weird that we aren't in Labor and Delivery. I associate this hospital so much with Emily that it is weird to have a whole new experience (I don't really associate the hospital with Caroline's birth...I guess because it all happened so quickly). Actually I kinda miss the labor and delivery wing!

Caroline's cardiologist visited her to Tuesday evening right after she got the tube. I talked with Caroline's pediatrician on the phone every day and on Thursday she came in on her day off to check on us. She even gave me her personal cell phone number so I could text her updates. I told Phil we can never ever move because there is no way we could find another pediatrician like Dr. D or an obgyn like Dr. Tyson. Amazing doctors like them are hard to find. We feel so blessed to have them in our lives.

Still no word on when surgery will be. They want to see consistent weight gain which shows she is strong. The stronger she is the better she will tolerate surgery.

Update: It is now Friday morning (I've been writing this blog all week!) and Caroline has gained weight!!!!! When we came in on Tuesday she weighed 3.74 kg. This morning she weighed 3.86 kg! That is 1/4 of a pound in just a couple of days!!!! This is HUGE in our world :) Also, she woke up smiling today instead of crying. That makes for one happy Mommy and Daddy. We should be getting discharged today. We have to wait to get taught from the medical supply company how to use their equipment. We will also be having an in-home nurse come by our home to check on us. I'm not sure how often the nurse will be coming by.

I wish ya'll could see Caroline. She is such a happy baby, a great snuggler, and has the craziest hair you will ever see on an 11 week old (well she will be 11 weeks on Saturday). She makes the cutest grunts and nastiest poops. She is now obsessed with her own hair. She likes to wiggle her fingers through it, to twirl it, and to grab it and hold on. Her hair line is EXACTLY like Phil's. She lays there twisting her hair when she is sleepy, which is what I did when I was little! She really is the sweetest baby in the world (I'm not biased or anything).

loving that hair!

A special thank you to Robin my mother-in-law. She has sat with me at the hospital all week. She has been wonderful company and support.

Phil and I feel so incredibly blessed to have our amazing parents. All four of them are so loving and supportive. They are all obsessed with Caroline. When we see them they love feeding her, diapering her, and especially snuggling with her. They all are always itching to get their hands on her :) All four of them take care of us too. Seriously, we are so incredibly blessed. Thank you Grandma Karen, Grandpa Jeff, ReRa, and Gran Dan the Magnificent!

Love,
Megan