The Story of Kayelyn Olivia - As Told by an Email Journal

This Post is all the emails I sent out during Kayelyn's Stay in the NICU. After reading them, I realized they are a lot like a journal I kept along the way. Reading them now, it's amazing how much Nathan and I endured as a couple. We are stronger for it too.

Kayleyn Olivia Brewer came into the world on Friday June 6th, 2008 @ 4:14pm CST. She weighed 8lbs 14ozs and was 20 Inches Long. Kayelyn came into the world crying her head off as all babies should. BUT- the difference was this cry has sent us down a serious road to recovery for Kayelyn. When she was born, unknowing to us and our doctor and hospital medical team, her lungs were under developed. Her cry caused a medical condition called Pneumothorax, which basically means she cried so hard she popped her lung. This causes air to be trapped between her lung and chest wall, and puts extreme pressure on her lung. This caused her lung to collapse. Kayelyn was lifeflighted Sunday Morning from Katy to Children's Memorial Hermann Hospital in the Medical Center (Down Town Houston) because she required the use of a ventilator to survive. She is now resting comfortably in the Level 3 NICU Unit at Children's Memorial. We have no idea how long it will take for her to recover and come home, BUT, she is taking tiny steps everyday showing us small improvements which let's us know she is fighting and WILL survive. Everybody who already knows of Kayelyn's situation, we appreciate all the support and prayers that have been sent out -- THEY ARE HELPING!!!!!!!!! Please continue to keep our family in your thoughts and prayers during this most difficult time of healing. Today was a milestone day for our family. I was released from the hospital this evening, and got to go visit Kayelyn for the first time since her birth. Kayelyn came into the world via c-section, which leaves a long recovery road for me. I am maintaining a positive focus on a speedy recovery for myself, so that I can be strong when my little girl comes home. This has been the most trying time of our lives. Nathan and I are holding strong, and believe God has a plan for us and Kayelyn and Briley. This can only make us grow stronger has parents, a couple, and a family. We could not reach out to everyone to update and inform of her birth and every detail since, as we have been incredibly busy working with doctors and nurses at two hospitals. This is something that we could not have begun to cope with without the support of our family, friends, and church. We understand that everybody has a million questions and concerns. We will do our best to answer your questions and update you on the status of our precious little princess. Please continue to pray, pray, pray

EMAIL #2

Just a brief update on Kayelyn. She is making some progress, slowly but surely. Kayelyn is currently on an Oscillator. An Oscillator is a machine that assists in her breathing, and gives her oxygen. Instead of fully inflating her lungs, the oscillator replicates a “panting” motion instead of a full lung inflation. This allows her lungs to heal since they don’t fully inflate. When we started out, the level of oxygen she was receiving on her oscillator was at 100%. Yesterday afternoon, because her oxygen saturation had improved they are were able to turn her oxygen level down to 47% (She needs to be at 20% oxygen, because that is level you and I breath). In the middle of the night, she got feisty and started to pull on her IV, and other tubes. For a parent this is a good sign, as she is showing signs of strength and ambition to fight—She is also trying to breath against the oscillator. For the doctors this is bad, as she needs to remain still and calm so she can heal. They had to give her a bit more sedative to help her stay still. They also bumped her oxygen back up to 58%. They removed her Foley Catheter and she is urinating on her own, soaking plenty of diapers. This is a really good step in the right direction. She is receiving all of her nutrition via umbilical catheter. We are hoping to be able to start giving her milk when she is weaned off the oscillator. She also has two chest tubes on her right side that allow fluid and air to escape her chest cavity, if she goes into another critical situation like she did over the weekend. Those will be the last thin to be removed. The doctors told us that they hope to have her weaned from the oscillator onto a regular ventilator next week. Please continue praying for her, it’s making a difference!!!

EMAIL #3

HUGE NEWS!!!!!!!!!!

As of 9:00am this morning Dr. Khan moved Kayelyn to a conventional ventilator and she is holding her own at 21% Oxygen. She is completely off the Nitric Oxide and her chest x-rays are perfect. She is saturating her oxygen at 100%. Her blood gas tests are coming back perfect. The doctor says she is improving so perfectly that she may be extabated in the next 5-8 hours (Meaning the breathing tube will be completely removed) !!!!!!!!!! We are getting ready and heading to the Hospital right now to HOLD HER! If she extabated, she can begin feeding normally and will be HOME SOON!!! It’s a MIRACLE!!!! The doctors are shocked at how fast she improved!!!!

EMAIL#4

I was able to hold Kayelyn for the first time today for a couple of hours!! I couldn't put her down! She is getting better so quickly! She gets to have a bath tonight and they are slwoing weaning her off of the ventilator. In a few days she will tube free and learning to nurse and eat from a bottle!!! I have attached some photos for you to see from today!! I was so overcome with joy that I could not stop crying when I was holding her :)

EMAIL#5

Just a small update on Kayelyn. She is doing great. We spent all day at the hospital with her. I held her for 6 hours straight :) Nathan held her as well.....It was so wonderful..... She is still on the CPAP but is slowly weaning off, she is adjusting well and taking her feedings through the feeding tube every 3 hours. I worked with her all day on using the pacifier. Part of her requirments to discharge are that she has to:
1) Saturate Oxygen on her own <-- Obviously, still working on that.... 2) Mainitain her Body temperature by herself <-- She is already doing that 3) Accept her feedings & dirty her diaper<-- She is doing this via feeding tube right now 4) Learn and maintain the sucking reflex with a pacfier and nurse/use a bottle The nurse told me when I got there, that she had no interest in the pacifier/sucking..... We worked really hard!!! By the time I left today she was sucking on her pacifier which checks off part of Item # 4 :) YAY!!!! Hopefully she will move to a nasal cannula in the next couple of days. At that point we can begin nursing/using a bottle. She is almost free and clear of tubes/wires.

Email #6

Kayelyn is being transferred from the level 3 NICU down to the level 2 NICU (For less critical Babies). I am on my way to hospital to work on feeding her. She is no longer on the CPAP, she is on the Nasal Cannula and doing great!!!! If I can get her to nurse or take the bottle she will be SO CLOSE to coming home!

Email #7

Just got back from the Hospital... We had another really good day. Kayleyn is breathing room air through the nasal cannula. She is almost completely weaned off of the sedative. She has two IV's and a blood pressure cuff and that’s it.... The amount of tubes attached have been drastically reduced. Her incisions from the chest tubes are healing nicely....She has been accepting her feedings via the feeding tube. Tonight I attempted to feed her, but she wasn't quite ready and got herself pretty shook up when they tried to move her feeding tube. So we will wait a few days and try again. The nurses seem to think it will only be a week or two before she gets to come home... She is doing so well!!!
I have attached pictures from tonight-- some of her Sleeping, crying and with her hair bow the nurse made her.... You can see the red/auburn in her hair.... She is such a pretty girl!! She has perfect little lips!! :)
I am off to bed. Will have another busy day at the hospital tomorrow....

Email #8

Just a quick update on our little princess. I went to the hospital today to work with her on eating. She was able to nurse a little bit—she gets the concept, but the doctors still have her sedated to keep her calm and quiet (so her lungs can continue to heal) so she would try to eat and then fall asleep. In a few days, as the sedation wears off completely, she should be able to eat like a champ. J Her feeding tube has been moved to her nose and she has fully accepted the feedings she is getting through the tube. She eats 40+ CCs every 3 hours. She has gained weight and now weighs 9lbs 7 ozs…. She is maintaining her body temp perfectly and has been moved from the warmer to a real crib—Much more cozy & comfy J

The BIGGEST news of today is that she is no longer receiving any support when breathing. The doctors removed the nasal cannula tonight and she is breathing room air on her own, saturating her own oxygen at 99%-- This is perfect, she has to be in the range of 94%-100%.

I am headed up to the hospital again tomorrow to continue to work on her feeding. Today after working on it for a couple of hours, she and I were so tired we both fell asleep in a rocking chair next to her bed in the NICU. The nurse put up a privacy screen and let us sleep the day away. It was so nice to cuddle with my baby girl and she loved it as well—we both had a great nap J

These updates keep getting better and better. Thank you all so much for the support and prayers. It’s working!! She is a miracle baby!!! Hopefully sometime soon you will get an email saying she is ready to come home…. Until then keep the prayers coming…

Email #9

Here are some pictures from yesterday when we went to visit Kayelyn. She is doing so well. She is breathing completely on her own and looks adorable without all the tubes hooked to her face.... You can actually see her entire face! :) She is learning to eat and use her pacifier and is gaining weight steadily... She is now 9lbs 8 ozs. She has improved SO SO much. She is slowly coming off her sedation and is waking up & looking around. Now that she has had another bath, you can really see the red in her hair.... Hopefully it will not be much longer till we get the special call saying it's time for her to come home.

Email #10

Just A quick update. Kayelyn is improving by leaps and bounds. Last night they took her off her TPN and Lipids. These IV’s delivered nutrition to Kayelyn over the past 3 weeks while she was unable to eat normally. TPN stands for Total Parenteral Nutrition , She has been receiving nutritional formulas containing salts, glucose, amino acids, lipids and added vitamins. The reason they removed this is because she is now eating 2 ounces every feeding and actually took a bottle yesterday!!! She is also rapidly gaining weight—about an ounce a day. They have continued to lower her sedation and are no longer monitoring her stats—meaning she is functioning completely on her own…. We are headed to the hospital this afternoon to work on nursing. The doctors said all she has to do is be off sedation, learn how to eat completely on her own via bottle and nursing and she will get to come home. We are not sure when that will be, as she sets the pace, but it looks like we are in the clear. The doctors feel confident she is healed. We are ecstatic. We cannot wait for the call saying she is ready to come home J

Please keep the prayers coming….. We are SO blessed.

Thank you for all the support ……..

Email #11

We have had a good and most interesting weekend. Friday Briley went to stay at Aunt Jen & Uncle T's house while we went downtown to work with Kayelyn on Nursing. Everything went great on Friday! The nurses tried to tell me that she may not feed well, and not to get discouraged. They also told me that they would have a therapist coming to work with Kayelyn and myself to work on her sucking reflex. I told them this is not necessary, as I know that if they give me a few hours, I will have her eating like a champ. After a few skeptic looks, Kayelyn and I sat down in a rocking chair and we began to work on eating. After a solid ten minutes, Kayelyn was eating and burping like a little champ. Needless to say, the nurses were completely shocked that I was able to get her to eat. They had basically decided that she would need a lot more coaching, since she "apparently" forgot how to eat over the past 3 weeks-- umm yeah, OK. She is a Brewer/Barnes Baby-- we all know that our family loves food, my child has not forgotten how to eat :) So she ate and ate and the nurses made the attempt to Gavage (tube Feed) her because they were still unconvinced I provided enough nutrition. Needless to say, Miss Kayelyn spit up everything they gave her because she was already full :) What a good girl ;)
Kayelyn's nursing also did a number on mommy. Apparently, the infants sucking reflex stimulates more Oxytocin that is released into the blood stream than pumping alone. Oxytocin is your body's natural hormone that creates contractions after birth and helps everything shrink down and return to its normal shape.... Keep in mind, Mommy has not been healing normally, since I was not able to feed her until now--Kayelyn in fact, nursed SO well (Oxytocin Overload) that it made me have horrible contractions and begin to hemorrhage uncontrollably. We had to leave the hospital and consequently ended up in the ER for half the weekend to get the hemorrhage under control. Everything and everyone is fine now, but it was pretty scary for awhile. While in the ER we get a call the Briley is with Grandmama, and she has Strep Throat-- this is a lovely surprise, as our MAIN is goal is to keep the immediate family 100% healthy for baby Kayelyn's sake.... So Briley gets antibiotics and luckily I had a REALLY cool ER doctor (Who favored a Baywatch lifeguard) and he gave Nathan and myself both an antibiotic as a preventative to keep ourselves healthy. Thank goodness!!
MeMaw Left today, Mommy cried. Daddy consoled mommy. So now Mommy & Daddy are forced to do everything on their own and it already sucks. My mom was a HUGE help to us over the past month- we could not have done this without her help around the house and her moral support. Luckily, she is coming back in 3 or 4 weeks after Kayelyn comes home :) Our Laundry should be out of control by then ;)
Briley is excited because she left today to go with Grandaddy & Grandmama to Galveston to our beach house for a week. We decided it would be good for her to spend some time having fun with her cousins and aunts and uncles at the beach instead of dragging her around the hospital. This is good for us, because we are going to stay down at the Ronald McDonald House and work with Kayelyn on her eating for a few days. The nurses keep hinting that she will be home soon, but no one will tell us when....
Today we worked on nursing again.... As usual Kayelyn did great. So great in fact that the doctor cleared her to take all her feedings from me if I am there.... Meaning no more milk up the nose through the feeding tube. I know my lil Punkin Head is excited about this-- afterall who likes to drink milk through their nose?? :)
Please keep the prayers coming, Kayelyn is truly a miracle and we are SO BLESSED that she has made such a swift recovery. I will update you more soon!!! I have attached some new pics... Note the red hair and light blue eyes :)

Email #12

Well we just got back from our stay at the hospital, in the Ronald McDonald House. The stay was not as productive as we would have liked it to be because Kayelyn had a hard time feeding for the past couple days. When we entered the Level 2 NICU, down from Level 3 the doctors told us that we had just entered the "hard part". We thought they were NUTS!!!! What could be harder than what we had already gone through?? Of course we shoot them a crazy look carry on..... They were right. Suddenly, Miss Kayelyn has decided that she doesn't have much interest in nursing. She gets frustrated and mad and eats for about 15 minutes and gives up and goes nite nite. The bottle is a bit more productive, she will eat from it, but it takes major skill to get the milk in her belly. Since she had tubes down her throat for so long, she has an overstimulated gag reflex and has decided that anything you put in her mouth makes her gag. If this happens while she is eating, she can aspirate milk into her lungs and we will start all over from square one.....This part of our journey is "harder" because it's a huge test of our patience. As her parents, we know her lungs are healed and if she could master eating, she would be home. The doctors are very slow to move on increasing her time on the bottle. Out of 8 feedings a day they will only let her take the bottle twice... The rest of the time, they have decided, she can gavage feed (tube feed). They decided that trying to use the bottle too much, or nurse too much, takes too much of her energy and she is burning too many calories doing this. So now, our suddenly fast moving recovery has slowed down a bit. Mommy & Daddy are learning a new lesson in patience. We know this will all come in good time, it's just not fun to wait. Luckily we can stay down at the Ronald McDonald house when we want to, to sleep just down the hall from our girl. Its not the coziest place :) But you have peace of mind being so close. I have included a few pictures from our stay.... Hope you are having a good week :)

Email #13

Just checking in to give you a short update. We just got back from the hospital. Kayelyn's Eating habits are improving today; she went to 3 bottles a day and managed to eat them all. She is starting to gain more weight, so this is great for us as well. The doctors have been concerned about her gall bladder and liver, thinking it may be causing her bilirubin to be high and her digestion to not be as well as it should be. The doctors ran an ultrasound on her gall bladder and liver. The first one came back inconclusive, so today they ran another. Tonight we found out it came back normal, much to our relief. The doctors had also mentioned running and MRI/Brain Scan on Kayelyn, because they worried about brain damage from her lack of oxygen when her lungs collapsed. Today they decided she is showing that cognitively she is developing normally, so we do not have to have an MRI-- Thank Goodness!!! So today, was a very positive day. She is taking the right steps in the right direction... The doctors will still give us NO clue to when she may return home. They nurses like to hint it will be soon, but we still have no idea.....Please keep the prayers coming, I know they are truly helping SO much!!! Enjoy the Photos-- Nathan dressed her in her Camo Onsie.... So cute.
I hope you have a wonderful rest of the week and a great 4th of July!!!

Email #14

Happy One Month Birthday Kayelyn Olivia!!!
Today we went to the hospital to celebrate Kayelyn's one month birthday!!! I can't believe it's already been 4 weeks. She is growing so quickly and improving so much everyday! Today she took 3 bottles and gained 100 grams. The doctors were pleased with her progress today. They are hoping that if she continues to take her bottles regularly, they can start talking about discharge in the next couple of weeks, but again-- no dates or promises :)
In other news, we had to go out and buy a deep freeze today. The Milk situation has gotten a bit out of control. The people at the hospital milk bank told me I have close to 500 bottles of milk stored there and we have close to 100 here at home.... My mom gave me the nickname "Missy Borden" and I guess it's fitting :) The good news is, this will save all of us a lot of money in the long run, because we all know how expensive formula is.
Well, time to run for dinner-- late as usual- More tomorrow :)

Email #15

Hello Everyone....
Everything is pretty much the same with Kayelyn, the doctors are increasing her bottles from 2 a day to 3 a day. She is doing well and progressing well on her feedings. We met with the doctors this morning and tried to come to agreement on a game plan for her path to discharge. We are hoping the our meeting will speed things up a bit. We decided to leave the 3 bottles on for during the day, and allow Kayelyn to sleep through the night (she has been sleeping through the night), this way she wakes up hungry instead of the nurses waking her to eat. She hates to wake up and eat. We all feel she will be more productive eating on demand instead of keeping a strict schedule... Hopefully this will be more successful. :)
Here is a picture from this morning. She is alert and bright eyed. Its amazing to think by looking at this picture that this is the same baby that we almost lost 3 weeks ago. She is truly a miracle!!! We are SO blessed!!!
Hope you had a great weekend :) More tomorrow....

Email #16

Hey All....
Another late day at the hospital :) Kayelyn is doing really good today. She did great with her bottles and took all 3 bottles today with no spit up. We tried nursing again and she did great with that as well. The doctors are now increasing her to 4 bottles and 4 gavage for the next day or two. If she does well with that we will move to 5 bottles, then 7 and then 8. Then she is done and gets to come home..... We are not sure how long this will take. It's all at her pace, how fast she accepts that and how well she handles her feedings. While we are ecstatic about the prospect of her homecoming, we are in no way going to rush her. We want her to be healthy and 100% ready. Nathan and I are also required to take a CPR class for her discharge. This is required for any parent who has had an infant in the Critical Care ICU for respiratory problems. We also have to spend the night with Kayelyn at the Ronald McDonald House and do what they call "Care by Parent" meaning we take charge for one night with the nurse down the hall in case we have a question or an emergency. It's a slow road but we are getting there one day at a time. Your prayers and encouraging emails get us through it! Thanks so much for all of your support :) Have a good night!
The Brewer Fam :)

Email #17

Hello Everyone,
Kayelyn had a great night tonight!!! She was wide awake and alert and cooing. She nursed for 15 minutes and ate her full bottle. We are so excited about her progress tonight. She did not choke or spit anything up. They increased the amount of milk she took and she handled it very well. I have attached pictures from our visit tonight. She follows objects with her eyes and if you bring them in too close she crosses her eyes. Daddy was having fun with that :)
I have also uploaded a video to YOU TUBE.
http://www.youtube.com/watch?v=0iYJQD4hbpU
I am going to try and do this regularly so you can see the progress she is making. It's amazing to look at this video and think that just weeks ago she was paralyzed and extremely critical, and that we almost lost her twice. God is so good!! Kayelyn is a little miracle baby!! I am SO proud of her.
We are so so so blessed!
I hope you are having a great week. Take care.
Love,
Nathan, Melissa, Briley, Kayelyn, Zoe Zoe & Sully-Dog

Email #18

HELLO FAMILY AND FRIENDS!!!

YES!!!! It’s TRUE!!!! Kayelyn is coming home tomorrow!!!!

I spoke with her doctors and nurses this afternoon and they said we will be out of the hospital by this time tomorrow!

On Tuesday they switched her to bottle feeding as tolerated. Yesterday and last night she took all bottles and did great!!! Today they removed the NG-feeding tube and monitors and for the first time in our daughter’s life she is completely TUBE FREE. They ran a few more tests and everything has come back perfect!!! We have to take CPR today, meet with a nutritionist, meet with the doctors etc….Care by parent has been cancelled because we have been at her bedside so much, the doctors feel we are ready. We are ecstatic! I have been so busy today trying to get the house ready- Clean and DUST-FREE.

The good news is they are sending her home with a clean bill of health. The other news is that Kayelyn’s doctors advised us against having Kayelyn around anyone other than immediate family (Us & Grandparents) for 6-8 weeks from time of release. The only child they want her around is her sister. The main reason is germs. If Kayelyn was to develop a respiratory infection, we could end up back in the hospital. We need to give her immune system time to adjust to being outside the hospital and into her own environment.

We are SO SO excited about our little princess finally getting to come home! Briley is so ready to FINALLY play the role of BIG sister. Thank you to everyone that has supported us and prayed for us along the way. We could not have done this without you!!!

It has been a crazy 5 weeks!! We are SO SO blessed to have finally reached this day. I cannot wait to have our little girl home where she belongs!!! I am SOOOOOOOOOOOOOO HAPPY!!

Thank GOD!!!! We will have homecoming pictures soon!!!

Love to all! J

With Love,

The Brewers
Nathan, Melissa, Briley, Kayelyn, Zoey & Sully