Cayman's first days of life...

Wednesday, March 12, 2008

I'm trying to write an update from each day from when Cayman was born to now. I had forgotten to add that with my C-section they had to do a vertical cut on my uterus in order to make a big enough incision to get Cayman's large head out. So all future kids I would have will have to be delivered by C-section. Cayman's head measurement at birth was 48 cm...which seems so much larger than what they made it sound from the ultrasounds.

Sunday March 9th
So after seeing Cayman for the first at 1 a.m. I was taken to my room which was on the 7th floor, and Cayman was so far away on the 4th floor! All the hospital rooms were full on the 4th floor that is why I was taken to a different level. Our families left somewhere around 4 a.m. It was my Mom and Dad my brother (Tyson), Mike's mom, sister (Sam), and sister-in-law (Cara) that made it up to be with us. Tyson actually stayed with us and left that next afternoon on Sunday. Sunday was a very difficult day for me. The general anaesthetic was taking awhile to wear off, and my pain medication I was on made me feel sick every time I was up. Me being 3 floors above Cayman made it difficult physically and emotionally for us, especially Mike. He was trying to be with Cayman and be there to help me as I needed a lot of assistance just coming out of surgery. After talking to about 3 different people, the last one being the social worker, she worked it out for us to get moved to a room that opened up on the 4th floor. However I needed to get there by wheelchair which was a problem since I couldn't even hardly sit up in bed without getting sick...and vomiting is not an action ya want to do right after an abdominal surgery. But my mommy-strength kicked in and I determined to make it happen. Just being on the same floor as Cayman was such a boost that I had them wheel me into the NICU before even going to my new room. I held Cayman again. I was so weak and her head requires so much support I had trouble holding her for very long. That was about 7 p.m. on Sunday. So it had been from 1 a.m. to 7 p.m. til I got to see her.....very difficult. She had an MRI on Sunday and we found out those results on Monday night. I'll wait to share those results when I get there, so I can keep the update in sequence order.

Monday March 10th
On Monday, my mom and sister (Stacey), Mike's mom and dad, and our Pastor came to visit. Our pastor had come on Sunday too. Mom and Stacey mailed Cayman's cord blood to Duke and we received word that it arrived the next day and was being processed. Mom brought the decorated onesies from the baby shower and Stacey had burned pictures and videos from the shower. Mike and I had fun viewing those! Mike's parents brought us pictures of Cayman printed and put in frames. It's been so great to have her pictures displayed in our room for when we're not with her. Other people, like my nurses, all hover over them and enjoy seeing Cayman too. Cayman went into surgery for her stomach/intestine (Duodenal Atresia) around 10:15 a.m. Finally around 4 p.m. the doctor came in to let us know everything went alright. He put in a G-tube that comes right out of her stomach and through her abdominal wall for feeding purposes. Also a Broviac IV was placed in her right thigh. It's a more permanent IV. They can draw blood from it, give blood to her through it, as well as medicine,etc...it makes things easier for the medical people and Cayman too so they don't have to keep poking her or worrying about blowing out her little veins in her feet. He also had found something called Meckel's Diverticulum, which is a small bulge in the intestine. That was a very easy fix during the surgery and shouldn't cause any problems in the future. That afternoon my pain med's were switched by request of my Nurse-Mom :o) to something that might work better for me because I was still struggling with feeling sick when I would get up. The new pain med's worked great but later we would find out something went wrong (i'll write about that for Tuesday night). Before our families left, they went in to visit Cayman when she was returned to the NICU after surgery. We are not able to hold her now for a week. This is so there is no extra pressure or stretching to her abdomen. We can touch her. Mike and I spent over an hour with Cayman that night around 10 p.m. She appeared to be in a lot of discomfort and it was difficult to see her like that. The nurse gave her an extra boost of medicine and got her pain under control. We could tell by the look on her face she was resting much more comfortably. We then talked with Dr. Lisa Allred which is one of the Neonatologist. She gave us a full report on everything that has been found thus far through the MRI and the heart echocardiogram. The echocardiogram showed that her aorta which should come up out of her heart to the left, comes out on the right side. Some of the arteries that come out from that and go to her left arm first take a twist around her windpipe. I think this is called True Vascular Ring and will likely require surgery at some point in her first few years of life. It's not an emergency right now. It could later on prevent her from swallowing and breathing well. And just like her stomach/intestine, once fixed it does not pose any further issues or need other surgeries. The MRI results are a bit harder to take in. It diagnosed her Hydrocephalus is from Aqueductal Stenosis, narrowing of the duct/channel that should drain the fluid off her brain. The absence of the Corpus Callosum and the top of her brain does not come together...possibly was overstretched from all the fluid, and now her brain has a cleft in it. This diagnosis is called Schizencephaly. She has a cyst that compresses her 4th ventricle. None of their findings pose a threat to her life, it's more of the quality of life she will have. I'm not going to get into all the symptoms and possible difficulties she will face. Cayman is a very strong little girl and has already let everyone know that she's going to do things on her own time and will. So Mike and I are holding tight to the hope that she will do well in life in spite of the challenges she will have. After that we went back to our hospital room, it was 12:30 a.m. and did not get a very restful night's sleep after that report.

Tuesday March 11
Today all my cold symptoms fully returned..stuffy nose, chest congestion, cough, etc. My doctor ordered me an antibiotic, decongestants, and cough suppressants to help. It's been very painful as there are times I cannot control the coughing. And they don't want me to be coughing hard anyways, yet they don't want the crud just sitting in my lungs and getting infected. So this has presented a bit of a challenge for me. Cayman had a spine ultrasound and that came back normal. Later that evening I noticed I wasn't feeling well. I mentioned it to my nurse several times. She had been in regularly checking my vitals because my blood pressure was very high. The doctor ordered more blood work. He was concerned about Preclampsia. That all came back normal. Later in the evening there is about 5 minutes in there that I don't remember very well. I remember trying to type an email and the next clear memory I have I was laying down in bed with my nurse and Mike over me calling the doctor. Mike said I was incoherent, babbling things that did not make sense with small body shakes. The doctor came, checked into everything and discovered that the new pain med they put me on was a higher dose than what should have been and I was reacting to that. They immediately stopped this pain med and now I'm on just Tyelnol 3's. I haven't had another spell yet and my blood pressure has come down too.

Wednesday March 12 (Today)
Today is such a blur. So much as already happened and it's only the middle of the afternoon. We had three what they call "Family" meetings: one with the pediatric NICU team, one with the Neurosurgeon team and the Cardiologist. I'm going to try so hard to relay all the info that was presented to us within 2 hours of these 3 meetings.
Meeting #1: The Pediatric NICU Team
It had been decided to do her stomach/intestine surgery first before the shunt because this anomaly posed the worse immediate threat to her life. We didn't find out too much "new" information in this meeting than what we already knew but the meeting wasn't over when it was interrupted by the team of Neurosurgeons and since they are harder to get a meeting with we paused our meeting with the Pediatric Surgeon team
Meeting #2 The Neurosurgeon Team
Cayman's hydrocephalus is very severe. On Friday she will have a shunt surgericaly placed.
A shunt is a tube that is placed in the affected ventricle of the brain that has a valve on it to control the amount of fluid that flows out of the brain. The surgery should only take about 45 minutes. There is some big decision making in where to place the other end of the tube . Normally it would be placed into the abdominal cavity but since she just had surgery on her stomach, to put the shunt there increases her chances of shunt infection...which is really bad and the Neurosurgeons do everything to prevent a shunt infection. Another place a shunt can be put is in the Pleural Cavity (lungs) but in her case she cannot have this because she has way too much fluid to drain than what would be healthy for the Pleural Cavity to receive. So really the last place they can place the shunt is in her heart, but since she has some heart defects it was needed for them to look into that option further to make sure her heart can handle it. So today Cayman was taken down for a Cardiac MRI. Thank God it looks like her heart will be fine for them to place the shunt there. If not, I'm afraid to know what would have been the report we would have been delivered. This shunt will be temporary for her and will someday be replaced into her abdominal cavity. The Neurosurgeon hopes that will be in a couple years but really doubts it will be able to go that long. A picture showing how a shunt is placed can be found here. We talked some about her possible outcomes. I will not go into any details there. I will just say it's very grim. It's too much to digest as well as we would like to hope only the best for Cayman, and thinking about these outcomes is more like water on our fire than gasoline.
Meeting #3: Cardiologist
Nothing new was spoken than what we already knew about her. It was just basically letting us know the results of the cardiac MRI she had done today did confirm the aorta coming out of the right side instead of normally the left, and the arteries coming off it wrap around her windpipe, and this will probably lead to another surgery for her sometime in the future.

After those 3 meetings, I was discharged from the hospital. We are in a room called a Nesting Room. It's still at the hospital, just down the hallway from the NICU. We'll be here only for tonight. It's just like a tiny hotel room with a pull out sofa bed, TV, and our own bathroom. I haven't tried the bed out yet. I've heard it isn't very great so I'm a bit nervous about it because of my surgery. We're not sure where we'll go tomorrow. We're top on the list for the Ronald McDonald house but we have no idea when a room will open up there. If a room isn't open for us tomorrow night, we'll go to a hotel until it does. Although a hotel would be more comfortable for me being able to have my own bathroom it's too expensive to have this as only our last option. And since the Ronald McDonald house is so difficult to get into we have to snatch up the free room whenever it comes available so we don't lose it.

We spent a lot of time with Cayman before she went for the Cardiac MRI. She was awake so it was very exciting to us to see her responsive again. She's been "out of it" since her surgery on Monday. She's still on the respirator and they plan to keep her on it until after her shunt surgery on Friday.

Grandma Stamm (Mike's mom) came to visit this evening. She brought Mike and I a list of things we were needing. I think she really enjoyed her visit because she was able to spend some time with Cayman alone in the NICU when hardly anyone was around but the nurses. Usually there's a lot of doctors, other medical people, and other babies' families in the NICU. So it's always so nice when there's hardly anyone in there, and you can feel free to visit with Cayman without feeling watched.

So that pretty much catches us up to where we are right now. So from here out I will blog new posts. Thanks so much to everyone for caring about our little girl. Keep watching for pictures. We're hoping to buy a new card reader for our laptop soon.

9 Showin' Comment Love:

Sarah said...

You are such a strong and amazing woman to go through all you are, and still keep all of us informed with blogs! We are weeping and rejoicing with all of you over everything that is happening. We will keep bringing all of you before the throne of the God who is able to do all things.

Karen said...

What a precious child! We will pray for her as she is undergoing her surgeries and for you and Mike as you are with her. You will be wonderful parents to Cayman. With God, all things are possible. We cannot wait to she her in person, too love her and hold her.
Karen (Mom #2)

Kacey Bode said...

Congratulations on the birth of your beautiful Cayman!!! We will keep you all in our prayers!!!

Tammi said...

We love you guys. I agree with everyone else who said that you are so strong and that shows through Cayman. Cayman is one strong little girl - God is going to do great things through her - he already has! Keep telling her that Aunt Tammi loves her! :) I can't wait till I get to see her in person. I have pictures of her every where! :) We love you guys!

Donald, Lisa, and Co. said...

Wow...that was a lot. You have had to learn so much in such a short amount of time. It's good that you were able to write it all out today while it was still fresh in your mind.
I have been thinking of you and Cayman often. Even though we have never met I feel close to you and your situation.

It is so hard to see your child in discomfort and having to deal with surgeries. Sometimes it feels a little unfair. But remember that Cayman will thrive upon your love. She will know who you are and you will bring comfort and peace to her precious little life.

Stay strong. Being discharged from the hospital was hard for me. It wasn't easy leaving Elisabeth behind. I wanted her with me. I wanted her to know I wasn't abandoning her. But these situations are unavoidable sometimes. And you, being an inspiring women will handle it all with beauty and grace, I'm sure.

I wish there was more I can do to help. But unfortunately I am far away and can only offer my advice, experience, and prayer.

Take care Kristin.

Donald, Lisa, and Co. said...

oops....I mean Kristen (I have a sister with your name who spells it with an 'I')

samantha said...

I love you, Mike and baby Cayman! see you soon! :)

The new & proud Grandma said...

Our Dear Kris & Mike-- so much I want to say but do not have adequate words to express it... Love you three so much & I firmly believe that like you have said "It's up to Cayman and God" and we will continue to expect great and mighty things from our heavenly Father who cares and loves us beyond our comprehension!

Sherri said...

Congratulations on your little sweetie! Our son Miles was born on 1.3.08 with hydro. His poor little head was 53.5cm! You have our prayers. It's amazing how strong they can be when they are so small! If you would like to read more about our son- visit www.carepages.com. You'll have to sign up and his page name is MilesJacobLee. Congrats!