Home Sweet Home

My intent is not to stop blogging now that Cayman is home. Her journey is only beginning and just like in the hospital, we have been so amazed by this little girl's progress here at home. It's so worth making the effort to blog as much of it as I can. She is feeding out of a bottle some. There has been a few times she actually has taken a full feeding from a bottle which right now is 66 ml. That really helps out a lot when we don't have to feed her through her G-tube. We're still working out coordinating her feeding routine with the rest of her care so that I can get some sleep. She feeds every 3 hours. So I pump before each feeding, then we try to bottle feed for 20 minutes or sometimes a little more if she shows she'll continue with the bottle, then whatever she doesn't finish eating by the bottle we feed her through the G-tube. Time I get all this done and get her G-tube equipment and my breast pump phalanges cleaned I have about an hour and a half til I gotta do it all over again. It should get better as I get faster at it and as Cayman starts to feed more through bottle. I'm still learning my way around the G-tube equipment. My mom and Mike's mom (Sue) have been a big help to Mike and I.

Cayman has been very fussy. We think it could be her adjusting from the NICU to home. Her fussiness makes it tough to get some sleep when we're not up feeding her. So my mom or Sue have been with us a lot taking care of Cayman between her feedings so we can get some sleep. This has been such a blessing. I have discovered I have nothing in my reserve to handle pulling all nighters. When we came home with her on Friday, we got in late...around 11:30 p.m. We had all of our stuff, plus all of Cayman's stuff and her equipment. All of that was unloaded all over our living space downstairs at Mike's parent's house. It was a mess. So for the last couple days we have been trying to figure out where to put a house full of stuff in our two-room "cottage" we live in. So far no leads on anyone buying our house in Indiana. Besides lacking space to put all of our stuff, it is working so well living with Mike's parents. We're comfortable here, and it's great to always have eager help only a few steps away. I laugh at the irony of the situation, that once our 2800 sq ft house sells and we get a 2 bedroom apartment it's going to feel like we have so much space!

Now that we've gotten a lot of our stuff more organized and our huge pile of mail sorted through, I'm hoping to be able to blog more frequently again.

I'm sure there is a ton more I could blog about but my brain just hit a wall. So I'll just close with pictures of bringing Cayman home from the hospital!

Cayman's Going Home

Friday March 28
2:20 p.m.
I don't have a lot of time to blog. But I knew everyone would love to know that Cayman is going home today! Whenever they can get all her stuff ordered and to us today, and finish up all of our doctor meetings, and discharge paperwork, we are going home! That'll take awhile so it will probably be in the evening/night time. We're so very excited! I'm more nervous than Daddy is. There's a lot of care Cayman needs at home that isn't typical for a newborn. We've been shown and have had hands on training for it all. Plus a visiting nurse will be coming out everyday to help us. I'll write more later about all her special care she needs. But for now, the BIG news I wanted to share is CAYMAN'S GOING HOME after 3 weeks in the hospital!!

Thursday March 27
6:00 p.m.
I do not know where to begin to try and write about today. We met with so many people and took in so much information regarding Cayman's care:

• Car Seat Safety class
• Occupational Therapy-she got her splints on her hands today
• Physical Therapy-we were shown exercises to do with her
• the insurance lady-this required lots of phone calls and some faxing for Mike today
• Neurosurgery-they checked to make sure her shunt is on the right setting and ordered for her to be laid flat again so her fluid drainage will slow down
• The G-tube nurse-gave us a whole instructional lesson on how to care for her G-tube and what to do if it would get pulled out. Tomorrow we will learn how to feed her through her G-tube. Cayman is finished with her continuous feeds and now they are working on getting her full feedings to her every 3 hours, like a normal baby's schedule
• the discharge planning lady (Christy)
• getting all her follow up care appointments set up with Neurosurgery, Cardiologist, Pediatric surgery, Neurologist, Ophthalmologist, and Pediatrician
• Cayman had a hearing test done today. This was one of the last thing done today so by this time she was so disturbed she was almost completely uncooperative, so the test readings were not accurate.
  

I think that might have been everything from today. Not totally sure though. It was a lot!! We're a bit brain dead. Right now the plan is for Cayman to go home on Saturday if all keeps going well. She has to tolerate her every 3 hour feeding schedule. Please pray that goes well.
This picture is of Cayman getting her hearing test done. It was a simple, noninvasive test. Two electrodes were placed in front of her ears and one on her forehead. A tiny instrument was inserted just inside of her ear that made a tiny tiny noise. The test will only work if the baby is sleeping. The machine then reads the brain activity in correspondence to the noise. Cayman would not stay asleep. I tried wrapping my hands around her body so she would feel snuggled and relaxed during the test. This helped some but not enough to make the test readings accurate.


Even though today was busy, Daddy managed to get in some cuddle-time with Cayman.

Wednesday March 26
2:15 p.m.
Today is Cayman's 40 week due date. It's also my Great Aunt Betty's birthday and Sue Lowe's birthday. Sue is a friend of my family and has been a second mom to me. The picture to the right is my Aunt Betty with Cayman when she came to visit.







Physical Therapy (P.T.) came today. I'm not for sure what all took place during her session because we weren't there for it. I know the therapist outlined her body with cushions to try and keep her in alignment. Cayman tends to turn her head to the left side and they figure it is because that is the side Mike and I always sit on when we're with her. Because she always gets herself in this position it's causing her skull bones to shift and override each other even greater on her left side. The picture on the left shows all the cushions Cayman has to hold her body in alignment.







The Occupational Therapist (Heather) was back today. Cayman ate 5 ml of milk from a bottle. It took her 20 minutes to do it, but the fact that is she is sucking and swallowing is awesome! Heather ordered for us or the nurse to bottle feed her every 8 hours, only 10 ml of milk, not exceding more than 20 minutes. When bottle feeding is this new to a baby it can wear them out and upset their system if we would push past 20 minutes each bottle feeding session.

10:00 p.m.
My posts haven't been as frequent as they were in the past because there is so much going on...for good reason. We have been trying to get everything ready and Cayman ready to go home this weekend!! The doctor said right now they are looking at Friday or Saturday. There is so much for us to do and learn about her home care. She will be going home with her G-tube so we have to learn how to take care of that and to give her feedings through it. Tomorrow she will hit her full feeding which is 22 ml an hour of breast milk. She was taken off her feedings through her IV since she is now getting enough through her tummy. The car seat safety lady came by today and put Cayman in a seat for an hour. This test evaluated her tolerance of it and watched her oxygen level to make sure she could breath comfortably. She passed!! We had just enough time to snap a picture of her in the car seat before we were shooed out of the NICU because there was a surgery performed on a baby in there today. The car seat lady advised us to get a Safe Seat from Babies R Us. This kind of car seat would allow Cayman to stay rear facing in the vehicle until she reaches 30 lbs. Keeping Cayman rear facing for as long as possible will be the safest for her head if we were in a crash. So we went to Babies R Us tonight and got the car seat/stroller combo.

Daddy bottle feeding Cayman for the first time.

Tuesday March 25
3:15 p.m.
O.T. came this afternoon to work with Cayman again. Mike and I made sure we were there for the appointment since yesterday's did not go well. We weren't there for the appointment yesterday and we thought maybe Cayman would do better if we were with her since she knows us. Cayman blew the occupational therapist (Heather) away today. She said Cayman's sucking response was 180 degree difference than it was yesterday. It's still not where it should be but it's close. The plan is to give her a bottle tomorrow and see how she handles it. We're so excited! Heather gave Daddy and I "homework". She showed us how to work with Cayman to encourage sucking as well as some arm, wrist, and finger exercises for her. Cayman always keeps her wrists turned inward, and her arms bent at the elbow, as well as her left thumb is always tucked into her fist. Heather is going to make custom splints for Cayman's wrists and thumbs so that her muscles don't become shortened since she keeps them flexed so tight.

We talked to Cayman's main Neonatologist today (Dr. Lindsey). Right now the plan for discharge is this weekend. We're so thrilled!! Of course Daddy has to work so it's sad he may miss Cayman's homecoming but it'll be great for him to drive home and we'll be there!! Tomorrow she'll be up to her full feedings through her G-tube. That'll be 24 ml an hour. Once she reaches that she'll be taken off her IV feedings.

I love reporting our good news!!Daddy teaching Cayman to suck - one of the techniques the Occupational Therapist gave us to do with her

Cayman and Mommy snuggling

8:00 p.m.
Daddy and I gave Cayman a bath tonight all by ourselves. We're starting to get more comfortable with moving her and picking her up ourselves. It's been awkward and still is some because her head is large and not perfectly round like a normal newborn's.

Sometimes there is so much going on I forget to write about some things. Thank you Jennifer for asking about her head size. Two nights ago Cayman's head was measured at 43 cm. She was born with it at 48 cm. So quite a difference. Holding her is easier since her head is smaller than it was. 43 cm is still large for a newborn girl. The Neurosurgeon said her head will be large and maybe one day she'll grow into it, but not to expect it to become the normal size for a baby girl. A couple of her sutures (skull bones) in her head override each other. This override is visible on her left side of the head and in the back of the head. We haven't talked to the Neurosurgeon yet about this so we're not sure if the bones will eventually place themselves where they should be or what will happen. This poor little kiddo...she's doing so well but she has such a long road ahead of her. Just because she's doing so well, please don't stop praying for her. Her coming home is not the end of things. She'll have an Occupational Therapist, Physical Therapist, possibly home nursing care, we have to find a Neurologist to evaluate her brain development, as well as all her other doctor check-ups with her belly surgeon, and her Neurosurgeon. The MRI shows that Cayman has brain damage. How severe it is we don't know. Only watching her as she grows and develops will answer how mild or severe her handicaps will be. So please please keep praying for our baby!

Monday March 24
10:45 a.m.
I am feeling so good right now. I forfeited one night of pumping for extra sleep. To get 6 hours of sleep straight feels amazing. I haven't had that in awhile, even before Cayman was born. I had become so uncomfortable in the last month of the pregnancy I was fortunate if I could sleep for more than 2 hours at a time. I was becoming so worn down that Mike took my alarm away from me last night and he "made me" sleep till I woke up on my own. I'm so glad he did. I was a bit upset with him actually at first because there is so much going on today that I was afraid I would literally not wake up until late in the day. But he promised me he would wake me up before it got too late. He didn't have to do that though. I did wake up on my own in the mid morning. I feel so much better! Mike always seems to know exactly how to take care of me so perfectly...and now Cayman too!

3:15 p.m.
Occupational Therapy (O.T.) came up early this morning to work with Cayman on sucking. She wasn't very cooperative I guess. Their plan is to work with her 4-5 days a week. So I'm glad to hear them take a more proactive approach. Daddy and I worked with Cayman today and she was sucking on a pacifier again. I think because it's so new to her it takes patience and time to get her to take the pacifier. O.T. was very busy this morning so they didn't have a lot of time to spend with her.
We met with the car seat safety lady today. There's a certain car seat she recommends for Cayman that will be very supportive for her large head. We can get this at Babies R Us so that's nice. It's expensive but that's what you get when you buy something good, and it's important for Cayman's safety.
Neurosurgery was by today. Cayman's shunt is working great. Her setting is at its lowest and draining the fluid just as it should. We were given the ok to sit her up now. She's had to lay flat so the fluid wouldn't drain too quickly right away.

4:30 p.m.
The doctor took Cayman's nasal cannula off today to see how well she would breathe completely on her own. She's doing great without it! We're so happy to be able to look at her face without tape or tubes on it!

Cayman had visitors today: my mom, my sister (Madison), and my brother (Tyson)

9:30 p.m.
I suppose random moments of anger are typical and even natural in this kind of situation. I love my baby girl! I think she's perfect just as she is. I just hate that we aren't home with her. Right now we don't have that "picture perfect" family experience. I hate that Cayman has had to go through so much already in the first 2 weeks of her life. I hate that this is only the beginning of more doctor appointments, therapy sessions, evaluations, tests, and more surgeries in her future. I know that she won't know any different. This is her world and it is all she knows. But as her Mom I want so much more for her than this! I don't understand what God has planned, but I am trying to trust and believe that He has plans for her and us...plans to prosper, not to harm, plans to give hope and a future (Jeremiah 29:11). This is definitely not the way I pictured entering parenthood. I feel so angry. I want a chance to get real rest, to hold my baby girl, and not be around medical talk. When we leave the hospital in the evening and come back to the Ronald McDonald house for supper, everyone in the dining room is talking about their children they have in the hospital and what their diagnosis is and all they have been through. I use to feel alone in our world of having a child with birth defects. Here I am surrounded by so many that are in a similar situation as us. Mike and I have talked about going out for dinner some evening just to do something different from this routine and it would be nice to enjoy a meal without hearing any hospital/medical talk. We just want to sit at home, the three of us, cuddled up on the couch watching TV...relaxing and feeling like life is normal again.

Getting to Know Cayman

• she loves to have her arms tucked tightly in against her body with her hands up by her chin or face
• she likes being sung to
• she does not like bright light
• sometimes loud noise bothers her
• she does not like it when her diaper is wet or messy
• she likes her feet being held, both of them at the same time in one hand
• she is most comfortable in her daddy's arm, and he says that is because he has more pudge.
• her favorite position to lay is on her left side
  

Sunday March 23 (Easter)
10:45 a.m.
This is going to be my venting hour. I am so mad!! I mentioned yesterday that I have been asking about when Cayman can start oral feedings. I was at the hospital this morning when one of her group of doctors made their rounds. They started out saying Cayman is doing very well. Her feedings are up to 10 ml an hour now and they want to increase them every 6 hours where as before her feedings were being increased every 8 hours. She's breathing room air through her nasal cannula now. Since she was taken off the ventilator they were giving her oxygen through the cannula to keep her oxygen content up, but she's maintaining her oxygen levels well all on her own. She's gaining weight. And she has not been given any Morphine since yesterday afternoon at 2 p.m. and her heart rate is staying calm and healthy. So many positive things are going on. So obviously that is not the part that I am so mad over. I asked these doctors when are they planning on doing oral feeds for her. The one doctor said "Probably not for awhile". I asked "What is awhile". He said "Two weeks". My heart sunk! I asked him "What needs to take place before you will try doing oral feeds". He said she needs to show signs of sucking and he asked if she had been. All the doctors and her nurse all shook their heads. I calmly (I was trying my best even though I could feel my blood pressure rising) informed him that she was sucking on a pacifier yesterday, I didn't know if she was swallowing but she was definitely sucking. He said "We'll page O.T. and have them come evaluate her and see if she is ready". WHY didn't they do that before?! Everyone is shaking their heads no that she isn't sucking, but they hadn't even been trying so how would they even know. I asked the doctor what all has to take place before Cayman can go home. She listed several things: keeping her heart rate low without Morphine, breathing room air and keeping her oxygen levels high on her own, handling her full feedings, gaining weight, the Neurosurgeon's ok for her to go home. All of this has taken place except the feeding and no one is actively working on getting her to orally feed yet when she could be ready. I have a big problem with that. The longer they put off oral feeds I'm afraid it will be that much harder for her to learn how to suck and swallow. Why not, if she is doing so well, just try it now? My opinion is, for all that Cayman has wrong with her I don't think the doctors expected her to do so well and they are still treating her like a very sick baby. She acts so healthy and all the nurses that have taken care of her previously and all her doctors she's had over the last 2 weeks always come by and say in amazement how well she is doing. I don't like feeling like I have to "babysit" the doctors. And the Neurosurgeon team hasn't been keeping up with their notes in Cayman's chart so no one knows what's happening from their end of things. Because we happened to be at the hospital the other day when Neurosurgery came by is how I was able to inform these doctors today about what Neurosurgery's report of Cayman. I need to feel like Cayman is in the best of hands. I am so tired and can't be at the hospital 24/7 but I feel like I have to be to make sure everyone that is involved in Cayman's care is communicating. I'm glad Mike is back with us. It helps having a partner to go through these things with. So once he wakes up (remember he worked all last night) I'll vent all this to him too!

11:30 p.m.
Mike and I assisted the nurse this evening in giving Cayman a bath. Then we put a gown on her. The first clothes she's ever had on...and it was a hospital gown for a baby...a little tacky but still cute. We took pictures but later looking at them discovered they all came out blurry :o(. You can kind of see the gown on her in this picture. We took this picture right before we left tonight. She's extra tough to leave when she looks at ya with those beautiful eyes.

Missing Daddy

Saturday March 22
9:30 a.m.
It's been more of an adjustment than I expected without Mike here. He made it to work fine yesterday evening. I think it took him around an hour and half to get to work from Ann Arbor. He's staying at his brother's house since it's closer of a drive for him from there to work. I'm sure our two nieces are excited to have their Uncle Mike at their house.

I am so tired today. I slept in a bit longer than what I planned. So now I am very anxious to get over to the hospital to see my baby! Yesterday evening, when the baby passed away in the NICU, everyone except that family were asked to leave to give the family a time of private bereavement...very appropriate and understandable. But it was so hard. It made me want to cling to Cayman so tightly and I couldn't be with her. And I haven't seen her since then because of all this snow Ann Arbor got last night. About 11:00 p.m. last night I was about to tell Mom "Let's go see Cayman!" But in reality I thought about it, and realized that if we got stuck, it would be two women trying to push the van out of the snow and me having a C-section just 2 weeks ago, it probably would not be a good idea.

9:30 p.m.
Cayman is sucking on a pacifier now! Not a lot, but definite improvement. I had been asking the nurses when will they try to feed her by mouth. I've received all kinds of answers from "I don't know" "whenever the doctor orders it" "whenever Cayman shows she's ready by sucking". I focused mostly on this last answer and wondered why no one has been working with her then. So mom and I decided to take it into our own "hands" today. For the past couple days Mike and I have been trying to get her take the pacifier but Cayman really hated it. Mom had a good idea. She said since Cayman is so comforted by skin to skin touch, that I should take my finger, ungloved (of course washed very well), and try to work it into her mouth. I tried this and it worked! She relaxed her mouth and I later stuck a pacifier in her mouth and she sucked on it some. By the end of the day she was sucking very strong on my finger and then on a pacifier for several minutes straight before she fell asleep. I take that as a good sign that it was soothing to her. So she seems to be sucking well...now the next step is for her to swallow. Hopefully that will come as easy and quickly as her sucking.

My sisters (Stacey and Madison) and Stacey's husband (Dan) came for a visit today. Madison is staying the night with Mom and I at the Ronald McDonald house.

Daddy comes "home" tomorrow morning. Of course he'll be sleeping most of the day but just to have him back is great!! I'll probably take a nap during the day myself. I am so behind on sleep...but that's motherhood right? :o)

Bye Bye Daddy

Friday March 21
11:00 a.m.
There's not too much to blog yet. Daddy Mike has to return to work tonight so he (and me) are sleeping the day away. He'll leave today around 4 p.m. so he plans on going back to the hospital at 3 p.m. to be with Cayman before he leaves. We're going to miss him so much! We're thankful that he only has to work two nights instead of three. Normally he works 12 hour shifts (7 p.m. to 7 a.m.) Friday, Saturday, and Sunday nights. But since Sunday is Easter he has that day off. Since it's time for him to return to work what could be a more "perfect" time than a holiday weekend? Cayman and I are still really going to miss Daddy though, even if it's just for two nights and two days. I have found that I don't ever feel homesick as long as I am with Mike. My mom is coming up to stay with me. I am looking forward to that.

To assure sleep through the morning and part of the afternoon, Mike and I got up in the night and went over to the hospital to be with Cayman at 4 a.m. We of course held her. She had her first spit up all over Daddy :o). She didn't get him too bad actually. Her feedings are called Chimney feedings through her G-tube. It's where gravity drips the breast milk into her belly and it can come back out through the G-tube when there is air bubbles and then the food goes back into her belly without all the air bubbles. This eliminates her need to burp. However when we hold her the nurse has to disconnect the chimney part therefore her air bubbles can't escape. So when she did burp...or in her case more of a cough, she spit up with it. So we put her back into her bed so her belly could get out all the air bubbles through the chimney. The nurse (Robin) measured Cayman's head. At birth it was 48 cm, it is now 45 cm. It was a very exciting moment for us to hear this number. Since 20 weeks pregnant our lives had been centered around ultrasounds every 2-4 weeks measuring her head and watching it grow bigger and bigger. Now, for it to decrease in size and knowing that the fluid is not just building on her brain feels like I can breathe easier.

9:00 p.m.
Today has been a harder day for me. Not really sure why. Maybe it is because Mike is gone...or maybe because a baby died today in the NICU where Cayman is at. I'm sure it's a combination. Mom is here with me and I'm so glad about that. Ann Arbor is getting a lot of snow today. When Mom and I left the hospital today around 7 p.m. there was already so much snow we had a bit of trouble getting into the Ronald McDonald house's driveway. So we're kind of snowed in right now :o(, which makes me sad because I really want to go see Cayman.

Cayman's head bandage was removed today. The bumpy part on her head is the shunt. As she gets older, her scalp will thicken and it won't be so noticeable as well as her hair will cover it up. Also, her IV that was in her right arm was taken out. Each day she has less and less tubes it seems. Her feedings are up to 8 ml an hour. She's tolerating it very well...making lots of poopy diapers!

Hoping for Another Bright Day!

Thursday March 20
7:15 a.m.
We took a nap yesterday evening, and then woke up around 1 a.m. to go back over to the hospital. We were told we could hold Cayman later in the evening yesterday. So we decided to take a nap in the late afternoon and then go back to the hospital late in the night. Doing this schedule would help Mike get his body ready to return working the night shift this weekend. With so much excitement we went to the NICU, but found out we couldn't hold her yet. She had been very agitated all evening and the nurse thought it best for her to not have any extra stimulation. It's an entirely different world in the NICU. Normally it's always so healthy for babies to be held and be stimulated, but that's not always the case when a baby is in the NICU. They have so much happening in their tiny bodies...healing, drugs, etc. that holding them can actually be a negative experience for them. So we disappointingly but patiently wait till we can hold her. Maybe later today. Her body is going through a lot of adjustments right now: healing from 2 surgeries, getting fed for the first ever, decreasing her Morphine, the fluid draining in her head, breathing on her own without the ventilator, etc. Once she is resting more comfortably, less agitated, then we can hold her. We want what's best for her, and like I've said before, we want to hold her at a time when she'll enjoy it too! I know there's a lot of people praying for her and specifically prayed that her shunt (drainage tube in her head) would work and drain that fluid off her brain well. She must have received too much prayer because the shunt is working so well that the Neurosurgeon has to readjust the valve in the shunt to slow down the drainage because it's draining too quickly! :o) The shunt is working so that's awesome. You can see such a difference in her forehead and the top of her head where her soft spot is. I'm not sure if this is something you can identify if you've only seen her in pictures and as much as it's very evident in person. We could definitely tell she seemed fidgety last night, like she was uncomfortable or something. The nurse changed her wet diaper. She really does not like having wet pants. She doesn't cry, she just squirms a lot. Then it was time for her dose of Morphine. But she was still fidgety and fighting sleep. I gently placed my hand on her forehead and started to sing to her. Cayman shut her eyes and went right to sleep. I love that mother-daughter moment we had! It felt so good to be able to comfort my baby.

2:00 p.m.
Cayman's Morphine was decreased some more and her feedings increased. She's up to 4 ml an hour of breast milk...still a very small amount. She's doing so well. We haven't held her yet. There's a lot of visitors in the NICU today and she's a bit sensitive to all the noise especially now that she is so much more alert not being doped up on all that Morphine. The nurse (Debbie) said she has been quiet and sleeping most of the morning, and right when Mike and I got there she woke up and was very alert. It's so incredible how well she knows us! The nurse said she suctioned her mouth to get out all the spit and mucous and Cayman got mad! She can't really cry right now because her throat is sore and hoarse from the ventilator being in there for so long. But she went through the actions of a mad cry and turned all red. She was taken off her antibiotic today.

4:00 p.m.
We finally held Cayman! It had been 10 days since we last held her! She loved it! She went right to sleep in our arms! She wasn't sure about the rocking motion . Her eyes would pop wide open whenever I would rock her. But then she got use to it and it seemed to soothe her. 7:00 p.m.
Tomorrow Cayman's bandage on her head is coming off! From Neurosurgery's side of things, she's ready to go home. We're having a meeting tomorrow with the Social Worker and the rest of Cayman's doctors (she has so many it seems) to discuss from their perspective when is Cayman ready to go home. We're so excited to hear the medical people starting to talk about it. It's one thing that Mike and I have not inquired much about. Things can change so quickly and we were always afraid of having a time in our minds and then it might not happen, the disappointment feels that much greater. So we've taken things a day at a time...accomplishing each hurdle as we go. It's so exciting to me to think that the best scenario of Cayman's stay in the hospital we were always told would be 2 weeks. It sounds like we're very close to having it be there. She's so incredible. Besides all her birth defects...or maybe I should say in spite of all her birth defects, she is a very healthy baby. She's strong and handles things so well. Thanks for all the prayers, love, and interest in our little girl! I have to believe that is what has been carrying us through this time!

11:00 p.m.
We got a pacifier into Cayman's mouth! It was not easy! She would push her lips together so tight when we'd try. We tried dipping the nipple into water and that helped some but she still wouldn't open up wide enough to get the thing in there. We want her to practice sucking so hopefully oral feeds will go well for her. Finally how we got the pacifier in her mouth is, I put a glove on and worked my finger into her mouth until she opened it and Daddy quickly stuck the pacifier in her mouth before she had a chance to tightly close the gates on us. She had it in there for only a few minutes before she spit out. She seemed to suck on it but it was pretty weak, so we'll have to keep working on that.

Cayman's Baby Book

I've been looking for the right baby book for Cayman. I finally found it and ordered it tonight. I can't wait til it comes in!!

Doing So Good

Wednesday March 19
8:45 a.m.
Mike just called over to the NICU to find out how Cayman did through the night. It was such good news!!! Neurosurgery was by to check on her this morning and said she looked better in regards to her puffiness. They ordered for her Morphine (pain medicine) to be decreased some more. Also ordered for her feedings to be increased. They'll continue her feedings through her G-tube (belly tube). No news yet about taking her off her breathing tube. I have to believe we're close though!!!

12:00 p.m.
Cayman is doing so good!! The tube that went into her stomach through her mouth was taken out today. They are giving her a continuous feed of breast milk. 1 cc per hour...so a very very small amount continuously drips into her belly through her G-tube. They did a "practice" breathing test on her where they turn the ventilator to manual breathing. She breathes on her own and if she is having any troubles the machine detects that and kicks back on. She did fine with that..taking every breath all on her own. Then after that they drew blood to test her gas levels (oxygen, etc) and those numbers looked great. So the plan is sometime today to take the breathing tube out!! We may get to hold her today!! It's been a week and two days since we held her last! Daddy and I are so ready...as is everyone else. I don't think anyone else has been able to hold her yet...just Daddy and I.

4:00 p.m.
Cayman's breathing tube came out this afternoon!! She's breathing on her own perfectly! It's been such a happy day for us with so many things going in a positive direction.

She's had some visitors today: Grandma Stamm (Mike's mom), and his sister (Sam), and our Pastor (Dave).

7:00 p.m.
Earlier this afternoon, Mike and I sat in on an infant massage class. I am so excited to massage my baby. I have to wait yet though. She has so much stimulation going on with the tubes, healing, and the NICU is actually not always a very quiet place with all the machines that beep. I've wondered when Cayman is home and crying, if the way to calm her down is to make beeping noises instead of singing her a lullaby. I've been doing some massage on her, just not a lot. It's really tough with all the wires and tubes she has. But when she had all that swelling, and once we found out she did not have a blood clot I went to massaging any part of her arms and legs I could get to, to help her circulation so that the swelling would go down. Being a massage therapist, I am so ready to love on my baby through massage!

Breast Pumping

Tuesday March 18
I love my experience of Breast Pumping. There's so little I can do for Cayman right now in taking care of her. Pumping for her gives me a feeling that I am doing something special for her. One would think that pumping every 3 hours around the clock would be bothersome but it's really not. Perhaps someday it will feel like that if I'm still doing this in months to come but for right now it gives me such a boost in spirit. I love it when I pump a lot of milk! I am guilty of stressing when I can only pump sometimes as little as 1 oz. My lactation consultant is great. Pat is her name. She's an older lady that put my feelings at ease when I was so worried my milk wouldn't come in. She told me that she usually can tell which women will have problems with their supply. Their breasts will be widely set apart from each other, and hang long. She said I have perfect breasts and shouldn't worry. From a sidewards glance I caught a glimpse of Mike's face. He was beaming over the compliment. I didn't dare let myself notice or fully look at him. I would have been so embarrassed, my face would have turned a cherry red for sure. It was about the 4th day when my milk came in! It was so exciting to me!! I believe so much that breast milk is the best way to feed my baby. I want so much to give her the best start to life, especially since her start has already had so many challenges for her. I'm really looking forward to the day when it's her crying that wakes me up instead of my alarm clock every 3 hours!

Today's Update

Tuesday March 18
9:30 a.m.
Cayman is still puffy. She is on an antibiotic and didn't show any changes with the swelling. They just started her on a diuretic, medicine to help increase her urine output. They hope this will help get rid of the extra fluid her body is retaining. Her only kidney she has is working very well without any problems so that is a relief. Her pain medicine (which is morphine) has been cut back. They hope to keep her less sedated so she'll move around more. Possibly the lack of movement could be making the swelling from going down. It's been fun watching her wiggle. She's been highly sedated for so many days now, that all she does is just lay there, even when she's awake. I watch her videos of when she was first born over and over. She doesn't even seem like the same baby. I have to keep reminding myself that things are not always going to be like this. It is going to get better.

Cayman made a friend last night. A baby boy (Austin) born just yesterday joined her in the NICU. Having a baby in the NICU makes ya surrounded by some of the saddest of times. He's a little sweetheart though. He was transported from a nearby hospital. Everything was going just fine during the labor and suddenly they lost Austin's heartbeat. Austin's daddy said it was only 7 minutes and they had Austin out by C-section. But they don't know how long Austin went without oxygen to his brain. His wife is still at the other hospital recovering and Austin is at U of M.

There is a total of 4 NICU's here at U of M. Two of them are for the more serious cases and the other two are more for the stable babies. Cayman is in one of the more serious one's. One of the little premature babies that has been in the same NICU as Cayman just moved out of it yesterday to one of the less serious one's. Delilah is her name. She was a triple, and her other two siblings passed away. She just had her 3 monthed birthday.

When we came back to the Ronald McDonald last night, we stopped by the kitchen for a snack before bed. There was a girl in there named Rhonda. We started talking and found out she has a baby in the NICU also and she's been here 7 1/2 months with him!! He was born with his intestines in his chest which compromised his lung development. He has a tube that goes into his trachea to help him breath.

1:30 p.m.
They started feeding Cayman today through her G-tube. That's the tube that goes right into her stomach through her belly. I was so excited to see they were using my breast milk.
Her puffiness seems to be down some. She's peeing a lot so the diuretic is working. The doctor came by today and said there's a chance that today or tomorrow her breathing tube will come out. Our hopes are high!!


Here's me swabbing Cayman's lips to keep them moist. Since she's under a heater in her bed we can't put lotion on her because it would burn her skin. So she gets a little dry.



Cayman loves her bunny that Grandpa and Grandma Stamm got her.



I love her feet! They're just like her Daddy's...but she has my ears. :o)



Mommy kisses for Cayman.

Baby Shower

My baby shower was scheduled for Saturday March 8th (the day Cayman decided to be born) , but only about two hours before it was to start Mike and I were unexpectedly driving up to Ann Arbor. I wasn't feeling well. I had a terrible head cold (which is doing much better now!) and I just felt uncomfortable all over. Mike thought it would be best if we came up to U of M to get checked out instead of heading to a local ER. My uterus had become so quickly overstretched from all the extra amniotic fluid that her stomach anomaly was creating, that might have been bringing on contractions. In the operating room they said my uterus was very stretched and gave injections into it to help it shrink down with as much comfort as possible. It's not been too bad. So anyways, I missed my baby shower. There was a lot of snow that day so quite a few people couldn't make it anyways, and some others had heard that I wasn't going to be there so they decided to not come. Mom and I talked about just canceling it completely but we didn't know for sure who all was coming. There were over 40 people invited. There wasn't enough time to try and call everyone before the shower. Plus, Mike and I don't have everything we need for Cayman once we bring her home, so we were concerned that if people shopped off our registery and bought these items, yet didn't get them to us before she would be brought home we would be going out to buy them making their gift then a duplicate to what we would already have. So we thought it would be better for a lot of reasons to just have the shower. I was excited for everyone to decorate the onesies anyways!! I'm sure it was a bit awkward for all my guests to find out the guest of honor wasn't arriving, but everyone that I talked to that went said they had fun. We're planning, once Cayman is home and settled, having another "party". Not exactly a baby shower. More of a welcome home party. By then the weather may be really nice and we might just have an outdoor picnic. We're looking forward to that!!

We were going to hang pink and white round lanterns from the ceiling but since it was going to be a short, small party under the circumstances the room didn't get all decked out.

I helped mom make these cakes out of diapers, and when trying to figure out what topper for them, Madison picked up one of her ducks and walked over and put it on top...it looked perfect so we left it!

No New Messages

I blogged the other day about receiving an email each time I post a new blog. And if you wanted to be on the list then to leave your email address. Then I blogged saying it wasn't working for me. Mike did figure it out, but it's creating a Google Group, which each person that would want to be on the list would have to make a google account and join my group and then you would receive an email each time I posted a new blog, but it's like having another blog site and I didn't like that. So I'm not going to create the email list. Sorry. Hope you all don't mind just checking on the blog every now and then and seeing if there is a new post. Thanks so much for the support!! It's really carrying Mike and I through this time!! Reading everyone's responses is so enjoyable for us and it has made us feel like we are not alone! There is so many times we go back and reread each comment. I know some people have said that they wanted to comment but couldn't figure out how to. If you would want to comment through email instead my address is kris_lmt@yahoo.com.

Puff Baby

Monday March 17th
12:00 p.m.
Cayman is still very puffy. The doctor is going to put her on an antibiotic as a precautionary against a shunt infection. They're not sure what is causing all the swelling so they are trying to approach it from a more serious side, not because they necessarily think it's from something serious, as much as try to prevent it from becoming serious. A cranial (head) ultrasound was done on her this morning...we haven't heard the results back from that yet. And a dopplar ultrasound has been ordered to be done on her right arm where most of the swelling is. What the dopplar ultrasound will tell them is if she has a blood clot in her arm causing all that swelling. If she does have a blood clot they will put her on medicine that will help her body dissolve it. Her settings on the ventilator are really low and she is doing a lot of breathing on her own, but they want to wait to take her completely off it until they get her puffiness figured out and under control. So it looks like another day or two for her on the ventilator. We were so ready to hold her and now that is being delayed because of all this. They gave her a blood transfusion in the night because her red blood cell count was low. So we're not sure what's going on...we're just praying so hard that it's nothing serious!

3:30 p.m.
The cranial ultrasound showed that her fluid in her head is about the same amount as it was before the shunt. They were mainly checking to make sure it wasn't more fluid in her head. When her head was measured last night it showed her circumference being slightly larger, but this could be easily a measuring error. If two different nurses measure her head the tape could be placed differently making the numbers come up differently. So it's really tough to know if maybe it isn't larger or that it is. But the cranial ultrasound showed the Neurosurgeon that her shunt is working so that's good news. The dopplar ultrasound of her right arm was done. It showed no blood clots in there, which is what they were concerned about. She's still puffy, but all the things that would make it serious are showing up negative. So Cayman just likes to make us worry a lot.

I ate lunch today with another mom (Cassidy) that has a baby girl in the NICU. Her baby was born 3 months early. She weighed only 2 lbs 1 oz. We really enjoyed talking and being able to relate to each other in our NICU experiences. We went up to the 8th floor where there is a family lounge area. There's scrapbooking, knitting, computers, games, dining, and Mike's favorite-video games. He played video games while Cassidy and I ate lunch. It felt good to do something fun and different. Mike's mom and his sister came up today for a visit. They sat with Cayman while Mike and I relaxed for a bit. I didn't realize how tired I was until I sat down to take a moment for myself!

Mike told me a funny story about myself today. I guess last night, in the middle of my sleep I woke him up saying "Mike are you going to take Cayman's milk upstairs and put it in the freezer for me?" He mumbled a "yeah". And then I said "I can't find it!! Where did it go?!" as I'm searching all over the bed for it. I do not remember any of this. I was talking in my sleep and apparently thought I was awake pumping. I guess when ya pump every 2-3 hours around the clock your mind tends to think that is what it's always doing even while sleeping.

More Visitors to Meet Cayman

Sunday March 16th
Cayman had more visitors today:

• my mom and dad
  
• my two sisters (Stacey and Madison)
• my Aunt Carol & Uncle Paul
• my Grandma
• my Great Aunt Betty
• our friends Nick & Valerie

It's been a lot of fun having so many visitors...a bit exhausting, but still fun!

Cayman has us a bit worried right now. We talked to the nurse around 9 p.m. and she said that Cayman has extra edema (swelling). We went over to the hospital to check on her and find out exactly what is going on. They said that swelling like this can be from different things

• a blood clot
• the shunt isn't working right
• or just from having surgery

Her vitals are still really great, other than her heart rate was up a bit at one point, so the nurse gave her some more medicine to help her relax since she suspects Cayman is feeling uncomfortable with all the swelling. So they're keeping a close eye on her. This is unfortunately setting her back a bit on getting the ventilator (breathing tube) out sooner. It probably won't be tomorrow and maybe not even the next day. She's been on the ventilator since last monday!! We're ready to see that huge tube be gone!! She is breathing some on her own. And they took her off the morphine drip today and now are only giving her doses every 4 hours. So if we can just get this swelling gone, the ventilator out, and get her eating we can go home. But we have no idea how long all of that will take. It could be just another week....or it could be months. Please just say an extra prayer for our baby.

She had her first poo-poo today. Mike and I were so excited that we just so happen to be there for it...hehe...my Uncle Paul was there too. A joke was made that he scared the crap out of her. Since they aren't feeding her orally (only through an IV), there is nothing going through her system to have pushed the poop through...that is why it took so long for her to poopy.

Video of Cayman

Only a few minutes old, shortly after her first bath. Right at birth she had a strong sucking reflex. And in this video she is doing some sucking actions on the tube that goes to her stomach to empty it. It's cute how it looks like she is chewing gum because of it.

Cayman's Visitors Today

Saturday March 15
Cayman had a lot of visitors today. It was great!!:

• Mike's mom and dad
• my mom
• my two sisters (Stacey and Madison)
  
• my cousin Linda
• Our pastor and his wife (John & Barb)

I've been so out of it...not just while Cayman is in the hospital but even while I was pregnant with her. I just found out that somehow I missed adding my own mother-in-law's email to our updates we use to send out before I created Cayman's blog, so it was not until last week she found out about the blog from her sister-in-law. How terrible of me!! "I'm so sorry Sue!" And I have been living in her house since middle of December and it is so unlike me to make such a careless mistake and even not communicate well. Then, I promised my brother I would call him once Cayman was out of her Shunt surgery to let him know how it went. And I totally forgot!! The poor guy called Mike's phone way late in the day wondering why he hadn't heard anything yet. There is so much going on I don't know how to focus on it all. Even though it doesn't seem like there is much to do at a hospital but sit and a lot of waiting, I feel so busy. I'm pumping so when Cayman is ready to eat she won't have to be fed just formula. The breast milk will be a lot gentler and healthy for her stomach to digest, especially since she had surgery there. So I'm doing that every 2-4 hours, I gotta remember to eat, there's a lot of people we were always meeting with (doctors, lactation consultation, social worker, some lady about special equipment Cayman may need like a car seat, birth certificate lady, etc.) Finally things are just starting to calm down it seems. She's done with her two surgeries, she doesn't need hardly anymore tests. She may get some blood drawn to do another gene analysis. Since she has the IV and they can draw the blood through that we decided for them to test now. We were going to wait, but we don't later want them to prick her for blood when her IV is no longer in. Maybe they'll find a syndrome or something, but it really doesn't matter to us, unless it could help guide us in giving her the best care. But Cayman has what she has with or without a diagnosis summing it up. We just love our little girl and we're so proud of her...that's all we know! I was surprised, I didn't know how...*pause*...what's the word...easy?...no, that's not right....maybe less frightening it would be to deal with her anomalies after she was born than it was while I was pregnant with her. It's so much more comforting to be able to touch her and see her with my own eyes, than before all I had was her ultrasound pictures to look at and even though those were sweet, nothing comforts me better than the real thing! Yet because we're so in love with her and she's so sweet, it makes everything even more frightening because we want to keep her forever and hope that is God's plan too! How's that for contradicting myself? It's been so exhausting having so many tests, and so many more birth defects reported back to us. Thankfully none of the birth defects have been life threatening beyond the Hydrocephalus and her stomach/intestine issue, and now it's only the Hydrocephalus that poses the worse long term threat to her. We won't know how severe her brain injury is from the pressure of the fluid until she grows and shows signs of delay. They kept finding new things all the time, we were so afraid they would find something else that would require a surgery or tell us that she wouldn't live long, etc. We believe she can see and hear. Grandma Stamm (Mike's mom) bought her a pink bunny for her to have in her bed. When Mike would put it up in front of her and slowly bring it to a few inches from her face, her eyes would look at it and get bigger as the bunny got closer to her. She had this same reaction 3 times in a row, and then wouldn't do it anymore as if saying "ok Dad, that's getting old". I've watched her eyes follow Mike has he has walked around her bed. The first time I held her and started talking to her, she immediately turned her head and eyes toward me. It's been amazing that she has been able to voluntarily move her head with it being that large and heavy for her, but she's done so well with it. Whenever the top has been off her bed and she's open to the room, if there's a lot of people and noise in there, her vitals go up and the look on her face shows distress from the extra commotion. And that distress disappears when we put the top down so it's quiet inside her little cube. So these are very positive signs that we weren't sure if she would have because of her brain injuries. We're so proud of her! She is this amazing little person.

My little sister, Madison (3 yrs old), was so excited to see me. She has noticed we have not been around for awhile and has been asking for us. She hugged me so tight, and then stepped back and patted my belly and said "Cayman in there?". I told her "No, Cayman's back laying in a bed sleeping." Her response was "Oh, I wanna go see her" in a very whiny voice. She passed her little screen health test so she was able to go in and see Cayman. She was very quiet and star-gazed while in the NICU, and once we left she looked at me and said "I love Cayman!" It was a sweet moment for me.

Pictures!!!

Just only a few hours before Cayman was born. I was so ready!Here's me and my big belly on the operating table. I remember having to force this smile...I was so uncomfortable!!

I was not trying to look like Mother Teresa...I was very cold in the operating room.

Cayman, right at birth! I love she came into the world with a smile on her face! Her APGAR scores were awesome....8/9!

Holding my baby for the first time!!

Daddy and Cayman bonded instantly!

One day old

She's a Buckeye fan! Daddy's making sure she's not being brainwashed here at U of M

The day after her belly surgery. She's such a trooper!

Sweet Little Baby Cayman..she's loves her hands up by her face. Even in all the ultrasounds she often could be seen striking this pose.

Right after her Shunt surgery

The Grandmas

Holding Daddy's finger