Keeping up with a Medicine Schedule and Doctor Appointments

Kaylee's medicine schedule changes everytime we go to a doctor and we go to some type of doctor every month if not more.

Kaylee currently takes 6 medicines in the morning and 4 medicines at night. All of them are given to her through her g-button, which is kind of nice because I am sure she would be fighting me if she had to take them orally. Her medicines rang from prevacid to calcium for her DiGeorge Syndrome to meds for her heart rate for the pacemaker. It can get really hard to keep up with all of them sometimes, especially when the amount is changing all the time.

Kaylee has many doctors on her team of specialists. She has an ENT, Pulminologist, GI, Pediatrician, Heart, and anything else they come up with that we need along the way.

Every doctor we see wants to see us more times and trying to keep up with all of their appointments along with her Therapy schedule makes for a difficult schedule to work out for work. I completely understand why some women become stay at home moms because it can get stressful trying to balance everything.

Therapy to Catch Up

Since Kaylee spent a bit of time in the hospital time she came home with a pretty big setback with milestones.

We started Therapy the month after she came home and it became very clear she was going to need ALOT of help to catch back up.

She has come a very long way with Therapy. She used to cry uncontrollably and refuse to cooperate at all. She didn't want to be touched or messed with by anyone, which made doing everyday things like taking a bath, changing clothes, and changing her diaper an all out battle.

We tried the medical brush technique in which a few times a day you take this soft bristled brush and brush her arms, legs, and back for a couple mintutes. We did this for about 2 weeks and you wouldn't believe the improvement we saw in her sensitivity to touch. She is still a little weird about anyone touching her hands, but everywhere else she goes with the flow.

She couldn't hold her head up without any support and couldn't really do anything when we came home from the hospital. We are happy to report now that she is making progress in the fact that she can hold her head up by herself, she can hold her pacifier and other toys, she likes to roll to her side, and can roll over from her tummy to her back.

She is currently at the rate of a 3 month old baby with her gross motor skills and a 6 month old baby in fine motor skills. She will be a year old next month.

Kaylee has and continues to make great strides in reaching baby milestones, but we are still a ways away from catching up to other children her age.

Thank you!!!

I just wanted to take the time to say THANK YOU to all my family and friends that stuck by our side during the roughest patch of our lives with me and then Kaylee in the hospital.

Without your support we would have not be able to handle all of the stress and emotion that came with having her not at home with us where she belonged.

To My Husband -- I know we did not get to enjoy the joy of bringing our newborn baby girl home, but we have her now and thats all that matters. I am sorry it took so long for you to be able to hold her for the first time and to be able to develop that father-daughter bond you deserved. I appreciate all the support you showed me and our baby girl when we needed it most. I love you! Thank you!

To My Parents -- When I began to fall yall were always there to push me back up and I cannot thank yall enough. I love yall so much and without your constant support I would not be the woman or mother I am today. Thank you!

To My Friends -- All of you were amazing from the calls to checkup on me and Kaylee to the presents and visits at the hospital. All of your support was greatly appreciated and much needed. Thank you!

5 Month Hospital Stay

Where do I begin in talking about having your child spend the first 5 months of their life in the hospital?

We were originally told that Kaylee would only be in the hospital for a few weeks back when we didn't know that her heart defect was worse than we thought and before she came way earlier than she was supposed too. So imagine our frustration when time kepting going by.

Now when I look back on it I think about how fast time really did fly by. We spent everyday there with her (with the exception of one ice day). Time flew by because we were always waiting for a date, whether it be a surgery or growth mark.

We hung onto every word the doctor said as if it was our last. We had our good days where the doctors and nurses would say we were making great progress, but then the days would always follow with days of bigger setbacks than strides. You have no idea what your phone ringing with the hospital number at night can do to your heart. We had it happen on different occassions from her being put back on the ventillator because she is not breathing well, or she had an episode, or they need to put a new central line IV somewhere. It felt like a never ending mental battle.

You know its tough on your child with all the tubes, wires, IVs, and beeping machines. The worst feeling in the world is feeling helpless for your child. All you want to do is pick them up and say everything is ok, but the doctor says its too dangerous to pick them up at that point. You know there is no way that that beautiful little baby girl has any idea as to why this is happening to her and why I was letting it happen.

I went into many depression moments, with some lasting longer than others, but somehow I survived. I had many of days where I felt it was all going to get the best of me and I would just crumble away. I cannot even describe to you the emotional rollercoster that parents of children longterm in the hospital go through. Its a battle never meant to be won.

I can sit and complain and dwell on the 5 months we spent in the CHSU, but then I think of all the children who have been and will be in there much longer than us. I send uplifting thoughts for them everyday.   

You mean the Hospital is not my Home?

When talk began about Kaylee coming home it was decided that I would spend an entire weekend with her in the hospital to learn the ins and outs of care for her (more to what I already knew from watching). They wanted to make sure I could handle the oxygen, G-Tube Button, Meds, and everything else that came with my child's condition.

I worked hand in hand with the nurse to learn how to handle certain situations if they were to arise along with situations that were guaranteed to happen. She was amazing and I learned so many tips and tricks about staying organized with all of her supplies. There are so many little supplies such as syringes for meds, tape, and gauze to name a few. One great idea she gave me was to take a see through shoe organizer that hangs over the door and put all the little supplies in each pocket and label it. It has saved me so much time in trying to find things.

We were originally supposed to receive home care and the doctors at the hospital sent us home thinking we were going to get some extra help. Well a week or so after we got home we found out insurance was not going to cover it because her case was not that severe at that time. It was fine really because we were unsure about having a random person in our home and Kaylee really did not have that much need.

When we first walked in to the wing to get Kaylee to go home we saw a sign that said lunch celebration for Kaylee and Gavin, which was another baby that had been in there a long time, going home. That put a smile on my face. We started loading up the cart and the nurse was giving us more and more stuff just to take. Never turn down free stuff from the hospital! We took some pictures with the staff because they had literally become part of our family and we love them dearly. As we were loading Kaylee into the car seat the staff decided to present her with a poster board with a picture of one of The Incredibles signed by most of the staff giving words of encouragement to her. It was beautiful and almost made me cry, but did put a smile on my face. They also gave her a cute blanket to go over her in the carrier. Grandma Kathy was filming everything as we got ready and left. It felt so surreal that we were finally taking our little girl home, but also sad because she really did not know what home was. To her home was the room she lived in at the hospital. We loaded her up and I got to experience my first of many backseat car rides with Kaylee.

Once we got home we just kinda watched her swing and sleep. You work so hard to get her home and then once you get it it's like what do we do next. I wouldn't have my daughter any where else but home. She loves it now but was most certainly a skeptic at first. It is such a relief to have your daughter in the comfort of her home and able to just lay with her, or hold her, or playing just to see her smile. Most people don't realize how lucky they are to have that time with their children whenever they want.

Four Major Surgeries...Make that five.......

1. Interrupted Aortic Arch and VSD Repair
Kaylee had her first major surgery about a week after being born almost 6 weeks premature. I am not even sure I can recall everything that happened that day due to being completely out of it. All I can remember is getting to kind of hold her before they took her down,telling my husband that I cannot lose her, being a wreck while waiting, having the dr tell me everything went as planned, and seeing her hooked up to more machines than I cared to count in her room in the cardiac wing. Her surgery took about 5 hours and it most certainly felt longer. I cannot believe he was able to take such a small piece of an already really small baby and patch her VSD or hole in the heart and connect her aortic arch to where it was supposed to go. How do you thank someone for saving your daughter's life? I have no idea but I started with a thank you and then a follow up card of her after we left the hospital. This surgery began our prolonged stay at the hospital.

2. Pacemaker
Kaylee received her pacemaker about a month after her heart surgery. The doctors were hoping her electrical system would come back and we wouldn't need it, but unfortunately we never saw any improvement. That surgery was not as nerve racking because they had already put the lines in her heart, he just had to go in and make the patch in her stomach to put the pacemaker in. They decided to put it down in her left abdomen area because of how small she was. She didn't have enough room up by her heart to put one in up there. I admit at first I was a little creeped out when I saw it because you could clearly tell she had something there. I didn't want to touch it in fear of it hurting her, but the doctors assured me that as she got bigger it would get better and you would be able to tell less and less. 8 months later it's just another thing and I hardly notice it anymore. We will have checkups on it for the rest of her life and it is predicted that we will have to have it switched out between 3 and 4 years old. Kids use more battery power than adults, so as she gets older she will be able to go longer periods of time between needing to have it switched out.

3 & 5. G-Tube/Button
The next surgery Kaylee was to receive was a G-Tube. She was not ready to start feeding by mouth, so they wanted to do this in order to get her on the track to going home. They went in to place it at the same time as the ENT was looking at her lungs. Bad idea!!!!! The hole For the tube ended up being cut too big which would cause us more problems than we realized at the time. The G-Tube itself was a pain because it kept getting clogged and then at one point it completely came out. Yes that's right me and the nurse found her G-Tube that is supposed to be stitched in out of her one day. At that point they called another surgeon in to place the actual G-Tube Button in place of the tube. That was a step in the right direction, but wasn't the last. The hole was still too big and was leaking a little here and there but wasn't unbearable or even noticeable sometimes. So we continued on with the progress to go home. Now 7 months later we are back in the hospital to have it redone. The site got too bad in which her stomach lining was coming out of the hole and we were having to change her clothes after every feeding because she would leak and drench her. It was just too much to deal with, so they let the other hole close and created a brand new one. The hole currently looks WAY better than the other one ever did, but ask me in a month if I still am happy with it.

4. Nissen
After getting the G-Tube we thought we were for sure on the fast track home, but Kaylee had another idea in mind. We knew she had reflux and they say a lot of long time hospital babies develop it, but it took a turn for the worse. She started having episodes where she would reflux and start freaking out to the point of not breathing and turning blue. It was only happening every so often and then it progressed to once a day and then to multiple times a day. I remember the first time I ever saw it happen and I literally thought I was watching my child die. Her stats dropped so fast all I could do was scream for help. It eventually got to the point where the doctors said they feel the Nissen needed to be done in order to prevent the worst from happening. A Nissen basically is when they go in and put a tie around the top portion of the stomach to prevent things from going up the throat. That means no throwing up or burping. We were scared because that meant another surgery, but we knew it needed to be done so it was put on the schedule. She did great with the surgery and crazy enough it seemed to solve all of our problems. We were able to go home 2-3 weeks later.

Welcome to the World Kaylee!

I am not even sure I can actually put into words what it means to have a baby. I would have put money on Kaylee not coming that day, so that shows what my mindset was. I had been feeling contractions for the past few days, but I wasn't progressing so this was just another day of some pains feeling worse than others.

My lovely husband had brought me Mcdonalds for dinner and while I was eating my nurse had come in to check on me. She noticed that I was holding my breath through contractions. She asked how long I had been doing that and it had been about an hour. She said that she would be right back. When she came back she said they were moving me to labor and delivery. Now I had been in the postpartum ward for a few days and the last time they moved me I sat in labor and delivery for a few days before being moved right back because nothing was happening. I figured this was going to be the same case.

When we got to labor and delivery I told my nurse that I didn't think it was happening and I didn't want to get my hopes up. The nurse checked me and I had dilated to a 7 which is progress because I had been sitting at a 6 for a week. They were going to wait a bit and check me again before making the decision to call my doctor. The next time they checked I had moved to an 8, and at that point she said it was going to happen that night and they were calling my doctor as we spoke. I then started crying as I called my my mom to let her know it was going down. She was up there within 30 mins and so was my doctor. My husbands family had gathered in the waiting room. My dad was trying to rush off of work to make it but we were not sure he would get there in time.

When my doctor came in she checked me again and at that point asked if I wanted the epideral, and of course I said yes. The anesthesiologist was a really nice old man that decided joking about it being his third day would lighten the mood, but in reality only made me more nervous. I was freaking out and when I decided to look at my husband for comfort he was making a motion to my mom about how big the needle was. I about died! But the stick wasn't that bad and I started feeling pretty good when the meds kicked in. They kept asking me to move my legs and I could move a little but didn't feel a thing.

The doctor decided to go ahead and break my water, but when she did Kaylee started dropping down the canal fast and it was time. They put an oxygen mask on me and propped up my legs to start pushing. Kaylee came flying out about 15-20 mins later. When I say flying I literally mean she popped out very fast. I had more doctors than normal in my room due to my daughters circumstance with the heart defects. So they let me hold her for about 5 seconds and then rushed her to the NICU.

Everyone always talks about labor being horrible, but what they don't tell you is the afterwards is what you don't want to go through. The stitches from tearing, bleeding for weeks, burning while peeing, pain to walk, and then the breast milk comes in :/. Your adrenaline is going full force while in labor and afterwards you just crash. After the doctor came in to talk to us about what they were doing with Kaylee I passed out and nothing woke me up all night. You prepare to have your baby for 9 months and then it happens and your amazed at how fast everything goes by.

Your Baby has Heart Defects

The day we found out that my daughter had two heart defects and had to have heart surgery shortly after being born was the beginning of the long journey that has come to be our life. Having doctors tell you that they are sending you to a specialist because something doesn't look right but they are not exactly sure what it is will knock a hole in your heart.

My OB sent me to a high risk pregnancy doctor to have a sono done and then he sent me to the cardiologist where we found out that our daughter had a VSD (hole in her heart) and (at the time we thought) a coarchtation (her aortic arch was too small at a point). When I left that office I was in a million pieces. I called my parents to give them the news and I lost it. I couldn't stop crying. All I could think about was what she was going to have to go through and that she wasn't/ this pregnancy wasn't going to be normal. At that point I officially became a high risk pregnancy which meant more visits and sonos on a regular basis.

There is nothing anybody can say or do to make the sadness go away after learning news like this. I had a period of time where I was most certainly depressed and it was all I could think of, but you get to a point where it doesn't matter. You will do anything for your child and will be there for them no matter what the case may be. It took my quite awhile to get there, but once I did I was able to start prepare myself for what was to come next.

2 Weeks on Bedrest at the Hospital

I went into preterm labor at 32 weeks and ended up lasting 2 weeks before my daughter decided it was time. Being on bed rest in a hospital causes so many different emotions that anybody that has never had to experience it before could ever understand.

I was not allowed to get up to shower or use the restroom for fear of it causing my water to break. So that meant bed pans and sponge baths from the nurses. I feel horrible for the nurses that have to deal with that on a normal basis. You feel so helpless because you cannot do anything.

It's mixed emotions in which you want your baby to get as much time as they can to grow, but then you hate being stuck there and just want it to happen so you can go home. I went through so many ups and downs during my stay and cried more times than I can count. I hated that this was happening to me and my baby. Why did we deserve to go through this?

My husband was great and brought me food and stayed with me most nights. It can get very lonely up there all day by yourself. Having visitors is nice, but you end up feeling bad because you know they are there because they feel bad for you and how bored they must be just sitting there. Why don't you just sleep you ask? You try sleeping with a blood pressure cuff squeezing your arm every hour, IV in your other arm, blood circulating cuffs on your legs that are not comfortable, monitors on your stomach to monitor baby, and nurses coming in every few minutes to check on you. And don't even think eating is an option if your having a baby, yes that means liquid only diet (if you get that) which is just about torture. I had to be given magnesium shots in order to speed up the development of my daughters lungs, but that stuff makes you feel horrible and like you are burning up. All in all I would not wish bed rest upon my worst enemy.