A long stay in the NICU...

Avery came into this world fighting and she hasn't stopped fighting yet. The staff at St. Marks hospital told us from day one that she was a fighter. They said to be glad because it is probably why she did so well given the circumstances surrounding her arrival. 10 months later she is still as feisty as ever and I know she isn't about to back down anytime soon. She spent 90 days in the NICU and although it was an emotional roller coaster she sailed through and dodged about everything that should have came her way. The doctors said she was their "hero" because she did so well. The nurses said that she is very special and must have an important reason for being here. We were so blessed and will be forever grateful for the nurses and doctors that cared for her during her stay at St. Marks Hospital. We couldn't have asked for a better team and it made it easier for us to cope and sleep at night knowing she was in the hands of one of the best teams of medical professionals. Right away the nurses started calling her "peanut" because she was the smallest baby in the NICU. There are no words to explain how small she was. Sadly, I'm already beginning to forget how small she was. Even the pictures I've posted just don't do justice. If you will bear with me I'm going to document some of the day to day details of her 3 month stay in the NICU...

4/10/07-After Avery was flown to St. Marks Hospital Steve went home and grabbed a few essentials for my overnight stay. He brought them back to me and then went home to take care of Maddox. My friend and neighbor, Lisa had pretty much taken care of him all day and would watch him many more times while we visited Avery. Thank you so much Lisa! For me it was a very long night. I was having all the normal post delivery pain as well as huge amount of emotional pain and uncertainty. I was also having to pump-little did I know that I would be still pumping 10 months later. Avery got so use to being fed by bottle in the NICU that there was no way she was going to breastfeed. I tried several times after she came home but she wasn't having it. So here I am 10 months later about ready to burn my pump. Later that night the nurse from St. Marks called me and reassured me that Avery was doing well and was very stable. She told me her oxygen was only at 30%(room air is 21% and they can go up to 100%.) After I was done speaking with her I felt a little better and was able to get a little rest.

4/11/07-I checked out of Timpanogos hospital after only a 15 hour stay with permission from my doctor. Later that evening Steve and I made our first trip to see Avery. We had a 45 minutes drive each way. I had no idea what to even expect. We were given our code(number we had to use every time we called for information or made a visit.) We were shown where to wash up before entering the NICU and then they took us to her bedside. She was in the level 3 room which was for sick and extremely premature babies. There were several days when she was the only baby in the room. We made our "guest list" which could only be a maximum of 6 people that could visit her and the people had to stay the same throughout her stay. I was given tons of labels and breast milk containers to take home. They really encourage you to express breast milk because it is very important for preemies to receive all the benefits that come from breast milk. At the time I felt so helpless and figured that pumping and bringing her my breast milk was one thing I could do. It was a very overwhelming and emotional experience. She was the smallest baby in the NICU and got a lot of special attention. Avery was completely sedated and her eyes were still sealed shut. She was so small and she was basically skin and bones. She had a lot of bruises on her body from all the iv's and such. It was very sad to see her on a ventilator. The pressure of the air going in caused her whole body to vibrate. They had her on very high humidity for 72 hours. Preemies that premature have very delicate skin that can tear just from touch so they put her in high humidity to try and mimic the womb where she should still be. Her nurse was very sensitive and answered all of a questions and tried to give us an idea of what to expect in the coming months. She told us there would be a lot of ups and downs. The nurse explained to us that we wouldn't be able to hold her for a while because of all the machines she was hooked up to and because it would be way to stimulating for her. We were able to touch her gently and were told not to caress her because it would be too much stimulation. All of the terminology and machines were all new to me. Steve had the advantage to have previously worked in the medical field. So it was nice that I could ask him questions because he already understood a lot. The nurse assured us that we would become "NICU experts" and learn all the terminology and be full of questions.

This is the name tag the nurses hung on Avery's isolette. They called her "Peanut".

4/13/07-Avery had a chest x-ray and her lungs looked great. She was also able to be taken off her blood sugar medicine. However her electrolytes were not good because she was peeing faster then they could get fluid in her. As a result of this she became very "puffy" looking as you can see in the picture below. She also became anemic because of all the blood work they were having to do. As a result she had to have her first blood transfusion. This was very hard news for me to hear. I soon learned however that this is very normal and her chances of not getting one were pretty much 0% because they were constantly having to draw her blood to make sure everything was ok. The doctors also called around until they found the freshest unit available. The doctor also explained to me all the things that the blood is screened for. The best news of all was her first brain scan came back completely NORMAL. We were extremely relieved and grateful after hearing this news because this meant that the odds of major disabilities was a lot lower and that no major brain damage had occurred during her delivery and resuscitation.

4/13/07-3 days old

4/15/07-We visited Avery again today. She had her second portion of her first blood transfusion today. They were still chasing her electrolytes to try and keep up with her. She was on 27% oxygen(very good.) For several days she was on and off the photo therapy(for jaundice) light and today she happened to be off. Today she had lost a little weight(which is normal for all infants in the early days.) In the picture below you can see how skinny she really was.

4/16/07-6 days old

4/17/07-Today Avery had lost a little more weight. She weighed 650 grams(1 lb 7 oz.) Her second brain scan came back NORMAL again! She also had another chest x-ray and her lungs looked good. Her electrolytes were finally doing good. Today was the first time we saw her eyes open. The nurse gave us one of her tiny diapers to take home. It is so small-it is about the size of a pantyliner-and it was still big on her. They also started her on my breast milk. It was pretty much only a drop so they could see how her body tolerated it. They started her on .5cc(30 cc's is an ounce) and waited 24 hours before giving her more.

4/17/07-7 days old

Avery's eye's are slightly open.

4/18/07-Avery weighed 670 grams(up 2/3 ounce). She was on 22% oxygen and the photo therapy light was back on. She was given .5cc breast milk every 12 hours. She also had a cardio echo(heart ultrasound.) The doctor also ran a pic line(line ran from her vein to her heart.) This is better then the uvc line they had running from her navel because there is less risk for infection.

4/19/07-Avery was given more blood today. The photo therapy light was still on and she was on 25% oxygen. The results from her cardio echo came back and she had a small pda. A pda is an opening in a heart valve that normally closes when babies take that first breath of air. Since Avery was unable to breath on her own it never closed.

4/20/07-We visited Avery again today. She was on 29% oxygen and her photo therapy light was off. Due to the open heart valve they had to stop her feedings. The reason for this is because they had to put her on medication(indomethacin) to try and close the valve and they didn't want anything inter fearing in case there were any problems. Avery was given more blood today.

4/21/07-Avery weighed 760 grams today. This wasn't true weight gain. It was due to the blood she received. She had her third brain scan today and it was NORMAL. She also had her 2nd of 6 doses of indomethacin for her heart valve. Her photo therapy light was still off and she was on 35% oxygen. Her electrolytes were good. They started giving her caffeine to help her be more awake so they could eventually take her off the ventilator.

4/22/07-Avery got her 3rd dose of indomethacin. Photo therapy light was off.

4/22/07-12 days old

Steve's hand in the picture.

4/23/07-Avery weighed 770 grams(still not true weight gain.) She received her 4th dose of indomethacin. She had kind of a rough night. She was up and down on her oxygen needs(33%-50%) and her blood sugar was a little high. They switched out her feeding tube due to a suspected infection. They gave her a little sedation medication to calm her down.

4/24/07-Today was an exciting day. Avery was extubated to nasal cpap with a backup rate and was no longer on the ventilator. She received her 5th dose of indomethacin. She was given more blood today and was completely off the sedation medication. She also sucked on a small binky a little today.

4/25/07-Avery still weighed 770 grams(still not true weight gain.) Her oxygen ranged from 43%-60% which seems high but is actually pretty good because she is doing the actual breathing herself because she is no longer on the ventilator. She needed more oxygen because she is working hard to breathe. She was laying on her tummy today which she grew to prefer. She was given small does of sedation to wean her off because they think they went to fast when they went cold turkey yesterday and she wasn't a happy camper. She received her final dose of indomethacin today and they switched her iv to the other foot.

4/25/07-15 days old

Avery off the ventilator and on nasal cpap.

4/26/07-They were able to start her feedings again today because she is done with the indomethacin. She received .5cc breast milk every 12 hours. She was down to 34% oxygen and her blood gas tests were good. She hasn't had any sedation for 24 hours.

4/27/07-Avery weighed 700 grams today(birth weight was 710.) She was on 47% oxygen and still receiving .5cc breast milk every 12 hours. She hasn't had any sedation for 2 days.

4/28/07-Avery lost a little more weight and was 690 grams. Her oxygen was at 31% and was given blood today. She was sucking on a pacifier and is receiving .5cc breast milk every 6 hours. She had an iv in her scalp which was a little disturbing but pretty normal-they use whatever veins they can find since their veins are so small.

4/29/07-Avery lost a little more weight and was 680 grams(1 lb 8 oz.) Today was the first time we heard her cry and saw her suck on a binky. Her oxygen was between 30%-32% and she had a very calm day. We watched the nurse do her cares(every three hours they change diaper, etc.) which included getting her nose suctioned which happened quite often due to all the moisture build up from the oxygen.

4/29/07-19 days old

Steve's hand in picture.

4/30/07-Avery's weight was still 680 grams. Her oxygen was at 27%. The rate on her nasal cannula was down to 12 breaths-which was down from 32 just a few days earlier. She is getting .5cc breast milk every 3 hours. Her pda(heart valve) was checked again today and it is a lot smaller. They aren't worried about it at all-it should close on it's own. She was very active today and was looking around.

5/1/07-Avery's weight was still 680 grams(in felt like she was never going to gain weight.) Her arterial line was taken out. Which meant we would be able to hold her soon. We couldn't hold her while she had it in because if it got bumped it could cause her to bleed a lot. She was getting 1 cc breast milk every 3 hours. She was switched to a regular nasal cpap(no rate) which means there was no back up breaths. Her oxygen was between 24%-32%.

5/2/07-Today we got great news. We could hold her. So of course we had to make a visit. She still only weighed 1 lb. 8 oz. so it felt like you were just holding blankets with no baby in them. It was amazing to actually hold her for the first time. She was given more blood today and her feedings were up to 3 cc breast milk every 3 hours.

5/2/07-22 days old Me holding Avery for the first time.

5/2/07-22 days old Steve holding Avery for the first time.

5/2/07-22 days old

5/3/07-Avery weighed 690 grams. She was up to 4cc breast milk and her oxygen was at 30%.

5/4/07-Avery was down to 670 grams. Her feedings were up to 5.5cc breast milk. She was switched to a high flow nasal cannula(good switch) and was on 3.5 liters at 30% oxygen.

5/5/07-Avery weighed 680 grams. Feedings were up to 7cc breast milk. Her feedings are given to her slowly over a 1-2 hour period so her body can digest it. After each feeding they check her stomach for residual-they pull up air through her feeding tube to see if any milk comes up. This is how they know she is digesting it and then they are able to increase the amount. They also measure her stomach to make sure it's not distended. She had a rough morning with a's&b's(apnea and bradycardia)and her oxygen was back up to 4 liters at 30% oxygen. Today I visited Avery with my parents and my sister Stacy. My dad recorded a short video of Avery which can be viewed at the bottom of this post.

5/6/07-Avery was down to 670 grams. Feedings up to 8.5cc breast milk. Her oxygen was 4 liters at 30%. She had no a's and b's today.

5/7/07-Weight up to 680 grams. Feedings 9cc. They started fortifying her breast milk up to 22 calories(breast milk averages 20 calories.) This was to help her gain weight. Oxygen 30%-35%. They started her on zantac and reglan for suspected reflux. They started giving her caffeine by mouth instead of iv.

5/8/07-Weight up to 700 grams. Feedings 11cc/22cal. Oxygen 25%-30% at 3.5 liters. She had a couple a's and b's but self recovered(didn't need any stimulation.) PIC line was taken out today(no longer on iv fluid.)

5/9/07-Finally weight back to 710 grams(birth weight). It took her a month but she got there. Feedings 12cc/24cal.(up from 22cal.) Oxygen 28% at 3.5 liters. Humidity in isolette down to 41%. She was desating a little but self recovers.

5/9/07-29 days old

5/9/07-29 days old

5/9/07-29 days old

5/9/07-29 days old