Starting Over

I'm so frustrated. They have stopped feeds again last night and began early this morning but just through her feeding tube, a small amount each hour to see if her bowels will handle the smaller amounts for now. It's like a trial and error process now that could take weeks to figure out. I have no clue where we go from here. She's now losing weight slightly and she's completing running on the IV fluids again to get those nutrients back in her body. Things were going so well the first couple weeks that's it's hard to be positive now when it all seems to be going backward. Miss Olivia tolerates everything so well and doesn't seem in much pain or discomfort so that's a huge relief.

X-Rays

Well, we're still having trouble and concerned with the number of stools Miss Olivia is having. They've made so many changes in the past couple days I'm not certain how they can rule out what the issue is but we'll see. The change in formula seems to be better as she's taking her feeds better and less irritable but surgeons are concerned because she has much less intestine than a normal child, due to the amount they took out during her surgery, that food is passing too quickly. They ordered more x-rays to make sure bacteria wasn't building up anywhere. Some areas were enlarged as the x-rays showed so they are putting her on an antibiotic to ensure bacteria isn't building where there could potentially be blockages. I just spoke with the doctor and for the amount of treatment and changes she's had to make over the past few days she's doing extremely well. She sure is strong! Everyone certainly agrees with that. At this point we're not certain if the issue is her lack of intestine compared to a normal child, a CF issue or that she has the intolerant formula issue. I hope we find out soon. I believe we're looking at at least another couple weeks in the hospital.

Update

After holding Miss Olivia's feedings until 9:00 p.m. last night she took 1 1/2 oz. when she was able to feed again and the nurses said she did well all night with the feeds we just have to see how the stools turn out. Surgeons agreed this morning to keep her at the amount she is taking and on the Alimentum formula. I can already notice the difference.

Good news regarding Addison's sweat test to determine if she was positive for CF. Tests confirmed she is NOT. Thank goodness!

Olivia is now at 5 lbs. 9 oz. so she has more than regained her birthweight which they are counting as 5 lbs. 5 oz. Although she was 5 lbs. 9 oz. at birth, those extra oz were fluid so technically she was 5 lbs. 5 oz. and 18 inches. So we're making good progress there!

Family Visits

Addison in the lobby at Children's-We have to come here every time she visits cause she just loves throwing coins in the water.

Entertaining herself by hiding in lockers

My mom, grandma, sister and brother were here to visit and hold Miss Olivia. She sure loved the cuddles!

Week 3 Ups and Downs

Week 3 started out very exciting with visits from family to see and hold Miss Olivia. Her feeds continued to increase upward from 1 oz. so enzymes were started to help her digest formula properly. This will become her norm with every feeding and throughout her lifetime, along with vitamins, and added salt to meals. Respiratory is training me on how to do the breathing treatments and they let me do the chest percussions on my own now. Something we do every morning and every evening that takes about 40 minutes, but is essential for her lung function, helping to break up any mucus that may build and cause infection.
As her feeds increased closer to 2 oz. I began to notice a change in her stools and she really struggled with eating and has been very irritable. I spoke with the neonatologist and surgeons today because I'm noticing the same symptoms Addison had when she was a baby and it was determined she was Milk, Soy, Protein Intolerant (MSPI) and had to be on special formula. We're not certain at this point if Olivia is experiencing the same problem but she is having too many stools to the point it is concerning doctors so we have stopped feeds again and will restart late this evening with the Alimentum formula and hopefully see a change.
Ironically, I was scheduled to meet with the team of doctors to discuss our discharge plan until all this occurred so it appears we've taken a step back but I'd rather we find out what's wrong now then getting her home and having more trouble. Although I'm very anxious to get home with her I know I have to be patient.

Less Worry

After worrying last night what x-rays and the surgeons may determine I got good news today. It was determined yesterday evening that an area in Olivia's intestine is very narrow so they may have to do another surgery to correct it. Luckily she's been having stools and additional x-rays show she should be fine but it's something they are going to watch closely, especially now that they are starting feedings again. She is also a little refluxy so they are going to give her some Zantac to help and maybe that will help her to eat more too.

I'm learning a lot about Olivia's treatment and they've let me do the chest compressions myself now. We started breathing treatments yesterday and she's been doing well. They say her lungs sound very clear. We will certainly be in a routine when we leave here.

Encouragement

People have sent me some great poems, quotes, articles
that have been a great source of encouragement. This
article especially may help others understand that
there are no limitations
for those with CF.

"Nothing too difficult for Nebraska Wesleyan student"

http://journalstar.com/news/local/education/article_80d65fee-5fb5-11df-90d3-001cc4c002e0.html

Poop Celebration

Who would have thought that one of the 1st's you'd want to celebrate was a bowel movement. Every day the past 3 days the surgeons have"guaranteed poop," as he says, but nothing. The past couple days were very trying. Although Olivia was taking feedings she started to vomit more which caused concern that there may be another blockage, so yesterday they gave her a tubal type enema to see where a blockage may be and several x-rays. Things appeared to be fine and this morning she has had 2 great stools thank goodness. Feedings were stopped the past couple of days so I'm hoping they will start again soon. Right now I'm just waiting on the surgeon's decision as to when that may be.

Nurses decided "good poop" deserved a pretty pink bow for her hair. They have fun putting her in outfits and dressing her up.

Aunt Cathy and Uncle Dave came over the weekend and brought some cute outfits. She definitely looks better in some color. Girls have to wear pink ya know and polka dots!

1st Bath

Cystic Fibrosis

5/12/10 The day was a very exciting day but by 4:30 p.m. everything changed. We were notified that tests confirmed Olivia has cystic fibrosis. This was immediately thought by surgeons due to the blockage in her intestines but wasn't confirmed until now. We really had just put it in the back of our minds thinking this wouldn't be the case. I am somewhat familiar with the disease, I have a younger cousin with Cystic Fibrosis so it was of great help and comfort to me to talk to my Aunt the evening I was given the news. If I hadn't done so I don't believe anything doctors could have told me the next few days would have been absorbed because I would have been far too overwhelmed. The past 2 days I have met with "the team" who will be taking care of Olivia, talking to pulmonologists, dieticians, respiratory therapists, etc. I am confident I can do this and Olivia will be just fine. A friend told me this quote and it got me through my first night after the news, "God only gives the mama's He trusts the most, His most delicate babies."

I think some people are mistaken about what Cystic Fibrosis (CF) is and much of what you find on the internet is not the most accurate and up to date so the best site to reference is www.cff.org to get the best info.

Cystic fibrosis is a life-shortening, inherited disorder that affects the way in which salt and water move into and out of the body's cells. The most important effects of this problem are in the lungs and the digestive system, especially the pancreas, where thick mucus blocks the small tubes and ducts. CF does not affect the brain and nervous system, it does not affect the kidneys, it does not directly affect the heart, the muscles, the blood and except the lungs, it does not interfere with the immune system. CF is inherited by receiving one abnormal CF gene from each parent, parents of a child with CF do not have CF and most often there is no history of it in the family.

We will have to learn to do a lot of things so all of that training we will get a Children's hospital like how to do breathing treatments, give her the enzymes she needs to digest food properly, pumping her chest to break up the mucus, etc. I know she is and will be getting the best treatment here and we are so lucky to be so close in distance to a great hospital like this.

5/13/10
Olivia had more lines taken out and I was able to give her a little sponge bath. She wasn't too certain about the bath but felt better afterward. She now only has her central line and by that evening she was moved to a crib, very exciting and a little less scary looking.

5/14/10
I didn't get to the hospital until about 1:30 p.m. because I decided to spend last night and this morning at home with Addison. It was nice being in my own bed and coloring and playing dolls with Addison this morning. She is very confused right now and told Daddy, "Mommy's not coming home, " so I knew it was time for me to spend time with her. This morning she woke up and came into our room, Scottie asked her why she had her flip flops and she said, "I don't know I woke up and my flip flops were in my hand." I hadn't laughed so hard in a long time. She loves these flip flops and was wearing them when we were reading our night time books and I forgot to get them off her. Oh it was so cute how she said it.

Olivia was started on food today but is having a little trouble so they did put a feeding tube in and she did take 4 feedings so now we just have to wait to see how her bowels are working. The nurses had done 2 feedings prior to me getting there and said they had a lot of trouble but after doing the next 2 with me they said she was certainly doing better with my help. I think she is progressing very fast and very well but we still have a long way to go.

Progress

On 5/10/10 we arrived at the hospital to find that they had changed how Olivia was positioned. X-rays were better so she is able to lay on her opposite side and her back now. They began weaning her off the pain med and we were told if the weaning went well the ventilator would come out. I was able to change her diaper and take her temp 2x and was so excited to do so although a little tough with all the wires. Later in the day they did up the pain meds and were unable to take the vent out. She was very alert so we were able to see each other a lot that day. It's just tough knowing she's in pain and trying to cry but you can't hear cries because of all the tubes.

5/11/10-They continued to lower the pain med dosage but she is still breathing too rapidly due to the pain in her stomach so they would rather wait another day to take the vent out. They like to see her breaths per minute between 40 and 60 and she is currently upper 80's.

5/12/10-I came in to the hospital just as they had taken the ventilator off and drainage tube at 8:30 a.m. They did put oxygen back on but took that off after noon. At about 9:15 a.m. they shut off her pain med and will just give as needed now. By 9:20 a.m. I was able to hear her cry, the first time since being here. At 1:00 p.m. I was able to hold her and did for nearly 2 hours! It was wonderful. She's already liking the pacifier, but her fingers best and her lungs are working well as she had a few good cries. Last night was the first night I spent alone at the Rainbow House and today the first full day but it was so exciting that it hasn't bothered me much. I'm really not sure how Scottie did this alone, while I was in the hospital. I just keep thinking we are very lucky. I look around at other babies and their families, so small, multiple surgeries, and those babies that are just alone, no one to touch or talk to them. It's very sad. I just can't even imagine.

Writing on the blog will be a great help to me and kind of a way to journal. Many are wondering how I can be doing this after all that has happened but in all reality it just helps to write it out somewhere and it's a great way to keep people informed without being flooded by phone calls since we can't take them in the NICU. More updates and pics soon!

Holding Olivia!

Olivia's 1st Days

On Mother's Day I was released from the hospital and made it to Children's that afternoon to see Miss Olivia and touch her for the first time!

Addison is very happy to be "big sister". I was told that she was telling the nurses at Bryan to "move, that's my sister," while she was able to get a quick glance before Olivia was transported to Omaha, very protective already.

I wasn't even certain how to hold Olivia and this is what they showed me as best. She especially likes it when I hold her arms to her chest. She certainly knows my voice and touch and Daddy's too!

Olivia Renae's Birth

As many of you know, Olivia Renae was born 5/7/10 at 2:26 p.m. 5#9oz. I went in to see the doctor yesterday morning after having some pains, thinking just Braxton Hicks, throughout the week. Once the ultrasound was done they were concerned with the amount of fluids they were seeing and distended bowels so a specialist was called in and I was sent to labor and delivery, by 1:00 p.m. they determined an immediate c-section needed to be done to get the baby out right away. By 2:26 Olivia was born, however, her belly was very enlarged due an obstruction in her bowels and was transported by the life support van to Children's Hospital in Omaha for immediate surgery to correct this. While mid-way through the operation there was concern that too much of the intestine would have to be removed and she would have to have a colostomy bag for some time and additional surgeries this had proven not to be the case once the surgery was finished. There was enough good intestine and damage was repaired in other areas that she is stable and doing well. There is some concern she may have cistic fibrosis but tests to confirm this won't be back for one week. This is all the info we have for now. Olivia is a fighter and we've been told this by many so we're certain she will recover quickly. It is expected she will be at Children's more than a month. We certainly appreciate all your prayers and well wishes. Thank you greatly.