The next 3 days

For the next 3 days our life revolved around the feeding times.  We went to every feeding.  The nurses taught us how to handle Katie with all the wires.  We got to change her diaper, check her temperature, feed her, and hold her as long as we wanted.  

Mike, of course, was awesome and went to all the feedings with me, even though there wasn’t much to do.  We got to spend a lot of time with Katie and fell deeply in love.

Ellee got to come on Friday and Sunday to spend the day with us.  She was not allowed in to the NICU because it is flu season.  On those days, Mike would take Ellee out on adventures and Grammie would come with me to hang out with Katie.  They would stay a couple hours and then leave in time to get home before dark.

Pastor Jane visited on Friday and got to see Katie and was there with Mike when the cardiologist spoke with Mike about Katie’s progress.  It was very nice to see her and have a break with someone from the outside world!

Mike explored Syracuse around the hospital and found a Dunkin donuts and Chipotle.  I’m not sure I can count how many times these fine dining establishments were visited!

We did have some drama on day 3 (Sunday morning).  The resident doctor, doing rounds, and in charge of me, barged in at 6am and told me I was being discharged.  I had been told weeks before that I could stay 4 days, which would be Monday, if Katie had to stay in the hospital.  We didn’t have any guarantees but a Monday release was the target for Katie at that time.  I argued with the doctor in my sleepy haze and she was firm that I had to go.  

Mike and I got up and immediately found the night nurse.  We were very polite and suitably panicked.  Our nurse told us immediately not to worry about and the nurses would handle it.  We then went up to the NICU and told the nurses there too.  They assured me that if all else fails, start crying!  It didn’t come to that, we check with the nurses about an hour later and they had handled everything for us.  It always pays to have the nurses on your side!

This is totally random, but here is the industrial hand wash station we used every time we went into the NICU.  You put your hands in and the sprayers circle your hands with a powerful blast for about 10seconds.  Mike had to buy lotion from CVS because it cracked his skin.

Hurdles Surpassed

One of my friends who had had a child in the NICU gave me advice a few months ago, to ask the NICU nurses regularly what Katie needed to do next to get to go home.  That way everyone knows what needs to be focused on and you can take it one step at a time but always move forward.  I took this advice to the letter and started thinking about these little steps as hurdles.  Here are the hurdles that Katie passed in the first four days.

1. Making it to full term!  She didn’t have any extra problems caused by coming early!
2. Screaming and Pink!  She passed this hurdle immediately, she didn’t need oxygen, she didn’t need emergency surgery, and she didn’t need medicine to stabilize her heart.
3. Oxygen saturation.  This is a measurement of how effective her lungs and heart are working together to get oxygen through her body.  Her saturation fluctuated a little in the beginning and then stabilized in the perfectly healthy range.  This is continuing to amaze the doctors.  Babies with this heart problem usually have lower levels, this is proving that even though she has a heart defect, her heart is still working very well.
4. Other organs.  Her abdomen was swollen when she was born and they were concerned there was an intestine blockage.  It turned out to be nothing, and all her other organs were functioning normally as well.
5. Eating.  Katie was sucking her lips and wanting to eat very early.  I started pumping and nursing at about six hours.  She took to it like a champ. 
6. Temperature stabilization.  They needed her to maintain her body temperature on her own.  She was having some trouble so they kept her bundled up for about 24 hours.  Mike and I also said a few words about the fact that her crib was in a draft and we were freezing too.  They moved her crib soon afterwards and she did much better.
7. Heart stable.  All babies are born with holes in their heart that help when then they are in the womb and being supported by the umbilical cord.  These holes close very early after birth.  The doctors watched Katie’s heart closely to make sure the holes did close on their own, and that when they closed they didn’t cause extra problems with her main heart defect.  Everything went well during this process too.
8. Blood glucose.  This became a little troublesome.  They put her on an IV right at birth to keep her nutrition up.  We then had to slowly take her off the IV and make sure her blood sugar levels stayed in the normal range from my feedings.  This was a little daunting with regular foot pricks and stressful for me to make sure she ate well every feeding even though my milk wasn’t in yet.  This process took about 12 hours and she passed every test.
9. Peeing.  For some reason our little angel holds it in.  They were worried she would get dehydrated if she went home.  This was annoying because she would have a wet diaper that weighed more than they ever usually saw, but they wanted 6 small ones rather than 2 huge ones.  Also, my milk wasn’t in yet.  This started the supplementation process.  After every feeding, even still, I have to top her off with one extra ounce.

After these hurdles, she got to go home!!!

1st Day

Here are my thoughts and memories of the first day of Katie’s life.  I am writing this on day twelve now that I have a moment to breath.  Sorry for the delayed update, but our week has been crazy!

Katie was only in the hospital for four days, which is absolutely amazing.  She is already a fighter and we are incredibly proud.    When we went to the hospital we were optimistically hoping for only a week to ten days, but it was possible she would be there for months.  None of the doctors were willing to give us any hope that her stay could possibly be that short.  I was really hoping we could be home in time for Thanksgiving.

Katie was in the NICU the full four days.  The NICU has three different types of cribs, ranging from totally environmentally controlled to open air.  Katie was moved into the best crib on the first night.  She never needed any oxygen, she had an IV for about two days, and was monitored for her blood sugar levels regularly.  In the pictures, all the wires look daunting but they were only monitoring her blood oxygen levels and heart rate.  Every baby in the NICU had those wires, she didn’t need anything extra!

Once she was born we noticed immediately that she was screaming and pink!!  Two huge hurdles passed.  If she had been blue or lethargic it would have been a sign that she would need emergency heart surgery or heart medication.  She was immediately cleaned up and I got to have a few kisses and Mike got to hold her.  Then they took her off to the NICU.  They would not let Mike go with her while she was settled in the NICU, so he stayed with me while I was sewn up.

  

 This sums up the delivery to me.  Lots of hands and an immediate heart check.  

 

The hospital staff had a grand time with Mike during the 45 minutes or so while they finished my surgery.  They found out quickly that he was a research biologist so they all talked ‘science’ in the operating room.  I was awake the whole time but didn’t follow the conversation, I do remember them talking about the placenta, Mike got to see how Katie’s umbilical cord only had two of the usual three vessels, they talked about what chemical my spinal block was and how it dulled the pain sensors but not the pressure sensors.  I’m sure there were many more exciting topics but I don’t remember any more.

I was then sent to the recovery room where a nurse stayed with me for three hours to make sure I recovered and could be moved to my final room.  Mike moved back and forth between Katie and I, getting updates and passing the information to me.  

I have some of the excitement preserved in texts to my mother:

1^st update: Her blood sugar was a little low so she is on IV.  Her blood oxygen was fluctuating but stabilized in the healthy range.  They did the heart exam and we are waiting to hear what the doc says.  They seem pretty positive.  She is sucking her lips hard and wants to eat!!

2^nd update: Only noticeable Ds marker she seems to have is a deep grove on her left hand, no effect on hand function.  Her mouth is structured fine.  Hearing test in a few days.  (She later passed the hearing test!)

3^rd update: I’m in our final room.  Got to see Katie for a few minutes.  Cardiologist said it is a different diagnosis than they thought…no drugs for now, and a fix it surgery in 2-5 months.  The heart valves are separate!  The hole is in a little different place.  Function is good, blood flow is good.  No immediate concerns.  Should get a better brief soon.

This is when I got to see Katie for a few minutes on the way out of recovery and into my final room.

4^th update: They are taking an x-ray of the intestines because her belly is a little extended.  Hopefully it is nothing, especially since the ultrasound looked so good.  (Her intestines were fine, must have been air from all the crying.)

 Here you can see her big belly that they were a little concerned about.

5^th update: She got a bath.  Her bloated belly is going down.  If she keeps up the good work they will move her to a crib later tonight!!!

6^th update:  Feeding Katie!!

That night at 7pm the nurse helped me walk.  Once I could walk, they would take me off the IV and let me go to the NIC U.  Talk about incentive!  The NICU is on a three hour schedule where they take vitals, change diapers, then feed the babies.  The parents can stay the whole time, but we were encouraged to be there on those three hour cycles so we could change her diaper and attempt feedings.  Once I was allowed to go up there, we attended every single session, except one that they asked us to skip because they had a traumatic hour trying to replace her leaking IV (I counted six attempts on her hands and feet).  The first night Mike took me up there in a wheel chair, then after that I walked. 

Katherine (Katie) Elise

Katherine (Katie) Elise has arrived!  Nov 7, 2013 at 12:01pm, 7lbs2oz, and 20inches.

I am typing this on my phone from the hospital bed on evening two, so I will go into more details later.

The main points so far:
1) She came out screaming and was at it all day. She has calmed in day two but is still full of personality and has an adorable pouty face.
2) She is in the NICU, mostly to monitor the heart.
3) Her glucose went a little low so she is on an IV until her feeding gets strong.
4) Her body temp is a little low so they are keeping her bundled up. She got moved to the least controlled type of crib on the first night!
5) Her intestines and other organs are all working well.
6) Her mouth is structured normally and she is eating fairly well. We had 3 of 4 great feedings today!
7) She has good muscle tone!  Low muscle tone is a common problem in Ds but she is kicking and swinging her arms. The nurses are impressed.
8) It is hard to explain here but her heart diagnosis has changed and is now Tetrallogy of Fallot. There is a hole in the ventricles and there is narrowing of the pulmonary artery, but a few other structural differences results in this new diagnosis. Her heart is stable, she does not need medication now, she will still need a corrective surgery but it may be a little earlier in attempt to 'save' some valve tissue and avoid the need for another surgery later in life.
9) The cardiologist is very positive and has even said that if things continue to look this good he sees no reason she can't go home on Monday!!
10) The hurdles to going home at the moment are... no new problems, feeding continues to get better so the IV can be removed, body temp stays controlled, heart stays the same.

We are all doing very well and are incredibly happy that Katie is doing so well.

Ellee got to visit today but couldn't see Katie because it is flu season and they don't want children in the NICU. She was very happy to see Mike and I.

Mike and I love Katie to bits and are very proud of how well she is doing. We were afraid to dream that she would do so well that she could come home on time. At the moment it is looking good. Even if she needs a few extra days it will be an impressive start!

Thank you for all the thoughts and prayers and kind words. We are truly blessed with amazing family and friends.

1 More Week!

We are less than one week away from meeting baby Katie and super excited!  My mother is in town and ready to take over Ellee’s care so Mike and I can focus on Katie.  Our plan is in place and we are anxious to get going!  

The c-section is scheduled for Thursday, November 7^th at 11:30am EST.  We would appreciate prayers for a safe delivery, focused doctors, and graceful beginning to our new adventure.

Here we are at 38 weeks!

Here is a cute one of "the girls"!