Home Sweet Home

Emma was discharged yesterday afternoon & we are all very glad to be home. We are all extremely tired, even our dog, Spencer who stay with the in-laws is pooped.

Emma's feeding started picking up while we were in the hospital & she gained 8.5 ounces according to the hospital scales, which is the most she has ever gained in a week. Now today she hasn't been eating very well & is really fussy but we are hoping she is just having a bad day & doesn't feel well. I have pretty much been holding her all day & that hasn't always helped, poor baby. I feel so bad for her. Thank goodness we have pain meds & Tylenol for her, I can't imagine how bad she would feel without them.

We had to follow up with her peditrician this morning & Dr. K. was very pleased with Emma's weight gain & that she is breathing easier. She said we will need to continue waking Emma up during the night every 4 hours to try & get her on track with her weight. She also wants to continue the high calorie diet which will also help her gain weight. She should gain pretty fast since we are not fighting against her body burning off too many calories.

Tomorrow we have a follow up with her cardiologist & I can't wait to hear what he thinks.

Good News!!!

Emma's feedings have started to pick up some & everyone is very pleased with her progress. They weighed her yesterday & it said she was 11 lbs, 80z but we think a lot of that was fluid from her IV. They did take her off IV fluids yesterday but they leave the line in until its time for discharge just in case they have to start fluids or something again. It is so hard to get a vein on babies & they don't want to stick her again if at all possible.

We took Emma for a walk in a stroller provided by the hospital yesterday just to get her out of the room & she seemed to really enjoy it. They have a large play room for children of all ages & we took her in there too. Now there wasn't really toys for children her age there but there were large kites on the ceiling which she loved.

Today when the doctor made rounds he said Emma could go home on Tuesday morning. All he wanted was to get some new chest xrays & an ultra sound, so we did those this afternoon. The doctor is suppose to stop at Emma's room first tomorrow when he starts rounds so we can leave early. I can't tell you how glad we are to be heading home. Emma has really bounced back fast but she hasn't been sleeping well & she needs to go home to be able to rest.

Out of PCICU

Emma moved out of the unit & into her own room Saturday around 5pm. She is doing well & looks great. She is sore, which is to be expected but she is still getting pain meds. She still isn't eating very well but the doctors are hoping that will turn around soon.

Doing Well

Emma's surgery went really well & it only took about 2 hours. She is still in the PCICU, but they took out the breathing tube this morning & are hoping to try & feed her for the first time this afternoon. She has opened her eyes several times & is getting restless/too active so they have had to give her some meds to soothe her, which is fine.

She looks great & will most likely be moved to her own room tomorrow as long as their is a bed available for her. There are many very sick babies in the PCICU with her right now, so please say a special prayer for them. Many of the babies have been here several weeks to several months, some even as long as 15 weeks.

In Charleston

Well a decision was made about Emma, but it wasn't exactly what we had expected. I got a call from MUSC Children's Hospital Tuesday morning asking us if it was okay to move Emma's surgery up & of course I said yes. The lady from the surgeon's office informed me the first date available would be Thursday, which of course meant we would have to leave on Tuesday evening but I went ahead & accepted the date. So as soon as I got off the phone with the surgeon's office at 8:15am I started making phone calls.

I of course called my husband first, then my mom & my oldest sister. I was fine while talking to Chris but while I was talking to my oldest sister Karen, I broke down & started to cry. It was starting to hit me that I had a tone of things to do & only half a day to get them done. To make matters worse, Emma had her 4 month shots the day before & woke up at 3 am with a 100+ fever. So Karen offered to keep Emma so I could quickly wash clothes, pack or run any errans I needed.

It helped me tremendously for my sister to keep Emma & I was almost ready when Chris came home from work. We left our house at 6:30, dropped the dog off at the in-laws (they love keeping him + he has never been boarded) & arrived last night at 11:30pm. Unfortunately Emma's pre-op appointment was at 9am & she didn't settle down until after 1am, so we were all very tired today.

Today they ran an EKG, a sedated echo, lab work & chest x-rays of Emma, which made for a very long day & she did great. One of the doctors who will be working with Emma while we are here came to speak with us & she told us the surgeon was considering repairing her VSD's instead of using a PA band & we were a little shocked but happy to hear the news. He was hoping to only do one surgery instead of 2 but he would know for sure once he saw all the results from her tests.

We met with the surgeon around 4pm & he told us he decided not to repair her VSD's now & to use the PA band. He says she has 4-6 holes at the tip of her heart & they would be really difficult to patch so he wants to wait, which is what we were originally told in Feb when we were here for her heart cathe. The surgeon says he would probably want to repair her VSD's in the next 6-12 months once her body & heart have time to grow. He says the smaller holes may close on their own in time but the larger hole will be the one that needs to be patched.

So Emma should be here about a week, as long as she recovers from the surgery well & starts gaining weight. They told us again today that if her feedings still don't get any better they will bring in specialists to help her. We can't wait for the day to be able to feed her without fighting & hopefully tonight will be the last time.

Down 2

Emma had her 4 month check-up this morning & unfortunately she has lost weight. She was down 2 ounce from 12 days ago when she was there for a weight check, which puts her in the 5% for weight. She is in the 55% for her height & 90% for her head, I guess that means she has a big head, not real sure. I did tell Dr. K that she hasn't been eating well in the last week or so, only averaging 12-15 oz per day. There has even been some feedings where we couldn't get her to eat anything at all. Dr. K isn't really sure what else to do other than put in a feeding tube, but Dr. O (cardiologist) is against doing that right now. She did put a call into him this morning & discuss her concerns & she is suppose to let me know if they make any decisions to help Emma beef up a little more before the surgery next week. Dr. K does want Emma to start taking vitamens since she isn't getting all the nutrients she needs from the formula & she also got her last RSV shot for the season.

Therapy flop

Yesterday Emma had an appointment with a Feeding/Speech Therapist & it was pretty much a big fat waste of time. We were really hoping for some pointers or suggestions on different feeding styles or positions for Emma but that didn't happen. The therapist watched me feed Emma & very quickly saw her resistance to eat. She said she was sucking & swallowing fine as far as she could tell but every time she would pull away from the bottle she would get a little less interested & having a harder time latching on. She even tried feeding her to see if she tried aiming the bottle differently if that would help but Emma just got more aggrevated. So her only other suggestion was to go pick up the Haberman Feeder which is made for babies with feeding issues. It was a very expensive bottle & thankfully we can file it with our insurance, since you need a script from a doctor to get one. Chris did try it last night after I wen to bed & it didn't really make much difference but he isn't sure if he did it correctly or not. We are going to continue trying the new feeder over the weekend & the therapist will be back in touch with us next week.

At this point I really wish everyone would just leave her alone. We saw her cardiologist this past week & thought Emma looked great. Dr. O even said, "she is do big." I told him nobody has ever called her big, I loved hearing him say that. He even went to get his nurse who was actually over at the hospital on another case when we came in, so she could see Emma too. She also thought Emma looked great too. Her pediatrician is the one who is concerned about her weight & that she may not recover very well after the surgery. Emma has her 4 month check-up on Monday so we can tell Dr. K how dissatisfied we were with the therapist, but to be honest Dr. K wasn't really sure whether it would help Emma or not but she wanted to try everything she could.

She did it!!!

Emma finally rolled over today. She has been working at it for about a month now but in the last 2 weeks she has been distracted by the fact that she can now grab & hold onto her toys on her play gym as well as reach for them & kick them. Unfortunately I didn't see her do it, I was drying my hair & when I was done I checked on her & found her on her tummy, instead of her back. I stood there & watched her for a few minutes to see what she would do & of course she started to fuss, so I rolled her back on her back. I am sure she will do it again soon & hopefully we will get to see her do it. Before too long she will be rolling all over the place like her cousin, Morgan, who will be 6 months old on Friday.

4 months old

Our baby girl is 4 months old today, but she is also not feeling well. She woke us up at 4am this morning with a very stuffy nose & crying in her sleep. So Chris got up with her & tried to clean out her nose with the bulb & feed her. Unfortunately she didn't sleep well the rest of the morning. I ended up checking her temp because she felt a little warm & she is running a low grade fever too, poor baby. She hasn't been herself the past couple days, wanting to sleep a lot + eating less than usual & now I may know why. Hopefully this cold will not last long or we may have to reschedule her surgery. According to our paperwork we got from the hospital if your child is sick (even a cold & low fever) within 2 weeks of the surgery you need to call & inform them so they can evaluate the situation. Next Thursday will be 2 weeks, so lets all keep our fingers crossed that she will feel better really soon.

This is the only little smile we could get on the camera, she just wasn't up for photos tonight.

11 and counting

Emma went in for a weight check yesterday & she has finally past the 11 lb mark. She is weighing in at 11 lb, 3 oz which means she gained 6 oz in a 2 week period. Of course it's great she is gaining & actually she is gaining consistently, approx. .5 ounce a day but she is still 2 lbs or so under weight. Her pediatrician wants to try & beef her up as much as possible before the surgery, so she is looking into sending Emma to a Feeding Therapist. The therapist usually gives the babies special nipples & offer suggestions for different feeding styles or positions. They usually work with babies who have a cleft palet, so Dr. K isn't sure they have much experience working with babies with issues like Emma. So the doctor is going to call the 2 therapist that are in town & see if they would be able to help. Feedings with Emma have become a real chore & we will take any help we can get.