Week 30

I was supposed to post yesterday, but time got away from me again. Somehow I can not seem to get anything done even though I sit in the NICU all day. Between pumping, jumping at each alarm, changing their diapers.... wow, I'm a mom! Carrie (sister-in-law) laughed at me the other day because I was saying I didn't have time for anything even though I should have time for everything. Now I totally get what her smile was about.

My mom came to visit Tuesday and Wednesday which was really nice. She helped me put Christmas decorations away at home and then kept me company in the NICU on Wednesday. She was dying to get her hands in the isolette, but she has to wait just like everyone else... sorry mom! I think it will be a knock-down fight between Debbie and mom when it is ok for others to hold/touch them. By they way, how's the knee Debbie?

Last night David got me out of the hospital - I'll call it a date night. We went to Costco and out to eat. It was great!! It was the first time I had been "shopping" in over 2 months. And let me tell you, non-hospital food tastes really good. Leaving the hospital is hard to do, but even the doctor has told me that I have to get out sometimes for my own mental health... I guess David has gotten to him. Truthfully, it was nice.

When we got back to the hospital, we got another nice surprise. Jack and Ella were wide awake for their diaper changes/feedings... We stood and talked to them and just watch their eyes trying to take everything in. David got some video of Jack during this time, so hopefully we'll get it on the blog soon. When Jack and Ella look at us, we know that they are only seeing shades of light, but it still makes us feel like they know who we are. The next 10 weeks will be tough... I'm ready to take them home now!

We spent the night at the hospital, and did our usual routine. David reluctantly left for work, and I retreated behind the curtain to do my part (pumping). When I was finished, the nurse called me over to Jack's isolette... Jack had found his thumb. It was soooo cute to see him lying there sucking on his thumb!! It is a very average thing for most babies, but for Jack it is great progress.

Besides Jack being all cute and everything, another highlight of the day was that I got to go to a luncheon with the other NICU parents. It is always nice to meet others that are in the "same" situation. Sharing stories seems to help you realize that you're not the only ones who know the feeling of being stuck between joy and fear.

Back to mommy's milk

Ella had a great day today. She responded very well to the transfusion. Her bradycardia (B's) rate went from 21 / 24 hrs to 3 / 24 hrs. Also, she's responding well to breast milk again. The docs will measure her hematocrit rate again on Thursday. As strange as it is, we're excited that she's pooping again since it reduces her bilirubin levels.

Over the last couple weeks, they're 16 days old now :), we're discovering their personalities. Ella is quite the drama queen and Jack is pretty laid back. She doesn't appreciate the 'hands on' time every couple hours and usually kicks and cries the whole time, while Jack usually will only whimper and throw the scowl face...

We're continually amazed at how well Jack has grown, considering how small he started. He has gained nearly 40% more weight since birth. Also, he is now at almost room-level oxygen on the CPAP. One of my colleagues at work noted that he would make a great Penn State linebacker prospect for the class of 2026. (wow, that seems like a long ways away...)

We're enjoying every day and appreciate the time that we can spend with them.

A Long Day for Ella

Today was a little stressful... When David and I came down from the sleep room this morning, we found out that Ella had 21 episodes (A/B) over the last 24 hours. Because of this, she was placed back on the CPAP (instead of alternating between the cannula and CPAP) for the day. She also had to undergo blood tests and another x-ray.

Fortunately, the x-ray came back normal and the blood tests did not show infection. She was, however, low on red blood cells. Therefore, she had to have a blood transfusion. Though the whole idea of have a transfusion scares me, I also understand that it is necessary in order for Ella to get stronger. She also was taken off breast milk today because her body was not processing it well. Hopefully tomorrow she'll be able to try it again.

I decided to stay at the hospital tonight just in case she needs me. I know this is very hard on David as he tries to hold everything and everyone together. I feel so guilty being off work and basically doing nothing all day while he has to make such a sacrifice. He started back to work on Thursday of last week, and if it were me, I know that I would be a mess. He hides it well, but I know it is weighing heavy on him. He splits his time between work, home, and the hospital. In all three places he takes care of everything though I am trying to work my way back into housework and being the advocate for Jack and Ella at the hospital. I've leaned on David the last 8 weeks (even more so than I did before), and he has been incredible.

We have faced so much over the last several years... despite it all, I love him even more...

Sorry to drag on and on. Here are a couple of pics David has taken the last couple of days.

Jack Kangaroo Care



Ella Chilling

Grow Babies Grow

Over the last couple of days I have been given the wonderful opportunity to hold both Jack and Ella... Holding them skin to skin is an experience that can't be described, but I can feel it from head to toe. I can't wait for the day when David and I have them at home, and we've moved on from hospital living. (Though having all the wonderful nurses, RT's, NP's, etc. taking care of Jack and Ella has been an easy way for me to heal from delivery.)

There is a part of me that gets a little jealous and frustrated not being the "mommy" all the time. However, I know I have to put Jack and Ella's needs first and that means getting out of the way sometimes.... I'll have my hands full in 3-4 months and look back at this and laugh.

On a different note, we did get some good news this morning. Jack and Ella have both gained weight!! Jack is now at 1lb 10oz, and Ella is 1lb and 14oz... I am one proud momma.

Also, after talking with the nurse today, David was given the run down on Jack and Ella's development. Jack is doing better with his respiration and digestive track which helps explain his steady weight gain. Whereas, Ella is doing better with her muscle tone and coordination. In the beginning I would have guessed Ella would be ahead in everything. I guess it just goes to show what a fighter Jack is and helps us know that the decisions we've made have been the right ones. I am overwhelmed with the power of faith and prayer.

Version 2.0

Kristy picked up this newborn onesie several months ago. It says Little Version of Daddy. I think it's the new, improved Version 2.0...

A's and B's

Jack and Ella had another good day today, I'll let Kristy talk about her experiences with Kangaroo Care, but they were both stable. Jack is now on the CPAP full-time and his oxygen level is below 30. 21% is room air. Ella now rotates 6 hours on the tube and 6 hours on the CPAP. She's usually about 21%. We love the calm, boring days...

However, since Jack and Ella are now both off the ventilators and breathing on their own, we have a new set of stressors. The docs call these A's and B's. A's are apnea, which means that the baby has stopped breathing. B's are bradycardia, which is a reduction in heartbeats. Oftentimes, the A's will lead to the B's. What usually happens is their respiratory rate falls below 20 / minute, then the heartbeat falls quickly from 150 or so to as low as 50 within a few seconds. Then their oxygen level drops from 95 or so to the 60's. During this time, the alarms go off rapidly and the nurse checks on them.

It is incredibly terrorizing, especially since they were delivered because of similar outbreaks with Jack. Fortunately, they usually recover quickly on their own, within 10 seconds. Also, the staff has a multitude of tools to assist, if needed, including an apparatus that will breathe for them. The docs say that we will soon sit through them, but that doesn't seem possible today... Also, they should grow out of these by around week 35. We can't wait.

No more respirator

Hey, sis, I'm off the respirator. Now, mommy might get to hold me too....

Kangaroo care

One of the cool things that Clarian/Methodist/Riley does here is Kangaroo Care. Tonight and while they're not intubated, Kristy will get to hold them skin to skin. Amazingly, this benefits the baby as much as the mother. While a father's skin just keeps getting warmer, a mother's skin will change to keep the baby at a constant temperature. I'm sure Kristy is looking forward to more...

Speaking of kangaroos, Jack and Ella are the top baby names in New Zealand for this year. Huh. http://www.stuff.co.nz/thepress/4344683a19716.html

Addition: Jack is doing really well, but is still on the respirator. Since it is a bit more sensitive to movement due to the tube down to his lungs, the docs will probably wait to start Kangaroo Care. We're hoping that this will be sometime this weekend. He's actually gained 4 ounces and is up to 1 lb 6 oz.

Signs

Kristy and I have often questioned why God took Claire and Gracie from us so quickly. When I read this poem a couple weeks before we went to the hospital, I thought of them. At first, it was the first couple stanzas that hit me, but this morning, I realized that the last stanza was a sign telling me that He always has a plan. Claire and Gracie taught Kristy and me immeasurable lessons, but without them, Jack and Ella would not be with us today. If not for the continual checkups, we never would have found Jack's low fluid nor would Kristy have undergone an immediate c-section because she couldn't feel Jack's distress calls. And the book where I read the poem was titled Amazing Grace.

A great Hope fell
You heard no noise
The Ruin was within
Oh cunning wreck that told no tale
And let no Witness in

The mind was built for mighty Freight
For dread occasion planned
How often foundering at Sea
Ostensibly, on Land

A not admitting of the wound
Until it grew so wide
That all my Life had entered it
And there were troughs beside

A closing of the simple lid
That opened to the sun
Until the tender Carpenter
Perpetual nail it down --

Emily Dickinson

Day 50

Today is the 50th day that David and I have called Clarian North our home... that means there are only around 80 days left. This may seem like an overwhelming amount, but David and I have been through so much these last 10 years that 80 days, well, that's nothing.

Today was another good day without any steps backwards. I don't mind standing still a while as long as we don't start moving the wrong direction. The NP told us that they were considering putting Jack on the nasal tubes but were hesitant because of his small size. He's gained 3 ounces, but that only brings him to 1.5 lbs total. David and I were relieved... we don't want to rush things and then have him crash.

David and I have spent most of our days at the hospital just staring into Jack and Ella's isolette. We are continuously amazed by them. They are soooo small, yet have such strength. How can babies that are so little do the amazing things they do every day. Today Ella actually changed the position of her own head. Babies that are full term sometimes don't have that much control. David and I just looked at each other in amazement.

David starts back to work on Thursday, which makes me sad, but we knew it was going to happen sooner or later. He is so amazing around Jack and Ella. It is amazing how his total disposition changes when we hear Ella cry or see Jack's little face. When I'm not in Ella's room but can hear from Jack's room, David speaks to her with such a gentle voice and tells her not to cry. Every time any of the alarms go off, David is always the first one there. I always thought he would be a great daddy... boy was I right.

I had so many more things to say, but my body is telling me it is time for bed. The aches and pains from my cesarean are under control, but I can't sit or stand for a long period of time or I get really stiff. I've always been a napper, but these days I am sleepy almost all the time. With that said, goodnight until tomorrow.

A view into Jack and Ella's rooms

Jack and Ella are both stable today. No changes from yesterday. Ella is off the CPAP again and she loves it. It's amazing how strong her little lungs are. The respiratory guy said that they were about the size of your thumbnail. The docs thought about trying Jack on the CPAP, but decided to wait a couple days while he gained some weight. Here are a couple pics of their room doors. As I'm sure you've heard, the staff here are so very kind to them... and, of course, they have 5 cousins (on each side) that want to meet them.

Mr. Jack's Door


Lady Ella's Door

Gotta be ahead of big brother

Ella had a great day today also. Her head ultrascan showed no bleeding and she got to spend 6 hours off the CPAP and on the tubal cannula. She had a few episodes but did excellently. She even showed us her little jowls...



Yes, that is a little pacifier on her left.

Thank you

Many thanks to our doc team and your thoughts and prayers. Jack's head ultrasound was fine. No bleeding. Also, the n.p. was able to get a PIC line on the first attempt. His belly line will come out tonight.

Ella's ultrasound will be sometime later this afternoon.

What a Day

David and I spent the night at the hospital last night and awoke to sun shining through our window... good feeling. When we got to the NICU, the nurses gave us the status of both babies. They had a good night, so of course, David and I released the breath we had been holding since we left them at 11:30pm the night before.

Every day I feel a new hope just looking at their little bodies snug in their isolette. I want to reach in and grab them but fortunately have had the wits about me not to. For now, I am content with getting to touch them and occasionally changing a diaper.

Speaking of diapers... David was overjoyed at Jack's first poopie. I, however, had a hard time cleaning his little bottom. You know, that black tarry poop that sticks so badly to them. Again, fortunately, the nurse was there to help me. Back to David... I need to clarify his "joy" over the diaper. Though he was a proud papa because lets face it, men are weird about their bodily functions, it was more than that. He was very happy that this was one less thing we had to worry about. Jack's digestive track is working even though it took a little longer than Ella's.

The big scare(s) of the day came as Ella learns to breath on her own. Though it is normal and will happen regularly during these first few weeks off the respirator, she sometimes forgets to take a breath and the alarms will go off. I can't help but panic and frankly, it makes me cry. Though she recovers fairly quickly and the nurses respond instantly, it scares me. David is the face of bravery and aways has the words to calm me.

This weekend we had several visitors, and we thank them for their company. It is always such a thrill to see their faces as they look at Jack and Ella. It is never of pity or sadness, but of love and hope. There are just so many people that have showed their kindness; I can't explain how much it means to us.

Tomorrow is another big day. Both Jack and Ella are getting brain scans to check for bleeding. Although there aren't any outside signs of bleeding, it is a normal preemie 7-10 day examination. I am terrified. I am trying to be positive, but knowing there is a chance scares me. We decided that we would sleep at home tonight because we will be spending all day and night at the hospital tomorrow. We are both try to keep our minds clear, but I can read David's face... he is worried too.

Besides the scans, Jack is also getting his umbilical line removed and a pic line put in place. We pray that the line will cooperate so that he does not have to have the same surgery that Ella had just a few days ago.

Each day is a new challenge, though things seem to be going well it can all change at a moments notice. They are still in critical condition, and we don't want to take it for granted since the last several days have been all "good" news. David and I have tried to post the good news while holding back on the downs. We are both worn out, but figure if Jack and Ella can fight for their lives every day, then little sleep, continuous pacing (David), living out of a suitcase, and the many tears are just a small thing we can do. Wishing we could do more is frustrating; David and I both would trade places with them in an instant...

However, we are in a great place with nurses and doctors that genuinely care for our beautiful babies. We feel very lucky.

My first poop

I got really excited about my first big poop and mom had to calm me down...

More good news

Hey mom, I'm breathing on my own, no more respirator


My echocardiogram looks great, but I want to join sis and remove this tube

Status quo

Jack and Ella are slowly being weaned from their respirators. They are both doing great right now.

We had an interesting talk with the neo this morning. She was a bit worried about Jack's skin tones. He is still quite a bit darker than Ella and they expected him to adjust a bit by now. So, they did some heart work (echocardiogram). We get the official results later, but unofficially they were fine. We'll take him any way...

Here's a pic of Ella's room...

A nice steady day

Today was a great birthday. Jack and Ella both are going up on the roller coaster. Ella is still on the respirator but is not getting any oxygen assistance. The n.p. (nurse practitioner) said that she may be able to move back to the c-pap in a couple days. No complications from the procedure either.

Jack got fed some of Kristy's colostrum today and kept it down, so they just gave him a bit more. Kristy is quite excited about being able to do this, as well as, comforting and changing them as you can see below.

Kristy comforting Ella during one of her fits


Kristy changing Jack's diaper


Who knew they made Pampers this big?

A Birthday Surprise for David

Last night David and I were fortunate enough to get one of the hospital's sleep rooms (a place for parents of NICU/pediatric kids to spend the night - 3 bedrooms with one shower room). We have to fill out a request sheet each day that we want to spend the night, submit it to the NICU secretaries then wait til around 3pm to see if we get it. So yeah...

Back to the surprise:
This morning, even after her surgical procedure just the night before, Ella was taken off the oscillator ventilator and moved to the respirator. She was doing so well that she just didn't need that noisy old oscillator anymore. What a fabulous present! Especially when we had no idea that this was going to happen. (It was certainly a better present than I've ever given David.)

Also, we learned that BOTH babies would get to try breast milk today. Up until now, they have only been given a solution of fat, protein, and carbohydrates via IV.

Of course as well as it looks at this moment, we have learned that things change all the time. Don't get me wrong, we are still full of hope (and faith) that we'll all be happily going home in April.

Procedure successful

Ella's surgical line is now in place. No issues and a great team that worked on her. More later.

Pictures

Kristy holding Jack's hand today





Kristy holding Ella yesterday

Back to the respirator

Good news. Jack just went back to the respirator this morning and looks to be doing ok with it. His blood work also is stable. The nurse is taking his shades off at noon, so we get to see his whole face for the first time in a while.

Ella's procedure to put in the surgical line is this afternoon. As I'm sure you're all aware, doctor's have their clock... We'll post an update and pics later.

Oh The Rocky Road

David is busy getting mad at the remote/TV right now, so I thought I would update you on the rest of today...

We finally left the hospital at 2:15pm. This of course is after David filled a huge cart full of our stuff from the hospital room and took it to the truck. David also loaded the cart with items to take to our new NICU home. I'm sure the nurses were laughing their heads off when they saw David come around the corner with what looked like a mountain of stuff. We also visited the NICU twice together (once for us and then a second time so that Mel, our nurse, could see Jack and Ella).

Leaving the hospital was bittersweet. This is the second time we have left the hospital without babies in our arms. We were both rather emotional about the whole idea. However, I was happy about the prospect of seeing Maddie and Lucy (the cats), and breathing "fresh" air.

Let me back track a little. The doctor stopped by this morning to tell us that our only opportunity to hold Ella would be within the hour, so of course I was very excited that it was finally going to happen. We rushed around and hurried over to the NICU. The ideal situation would have Ella and I skin to skin, but because of all her cords, IVs, etc. that wasn't going to be possible, but we did the best we could. I can't explain the emotion that filled me when I felt her in my arms. She would reach up and touch my chest, and it was the most incredible feeling. My whole body tingled. We have some really good pictures that we'll post tomorrow.

Anyway, we arrived home to some pretty happy cats, and a house I hadn't seen for almost 7 weeks. I took a nap on the couch, and David did laundry and unloaded the truck.

We left to go back to the hospital around 5:30. We stopped by McDonalds on the way because I was dying for some fries. However, this is when things, once again, took a twist. The Neo called to let us know that Ella's long term IV wasn't going to work and that she would need to undergo a surgical procedure that would put a permanent IV in her chest or neck. Of course I lost it once again. When we got to the hospital, the doc explained that the IV the were trying to put in just wasn't cooperating, and it was time to go to the next option. A pediatric surgeon from Riley came to hospital to take a look at Ella and the equipment available to him. He decided that he didn't have what he needed so the procedure will be Thursday afternoon instead of tonight.

Though it was incredibly stressful, we trust our doctors and am comforted by it.

On the other hand, Jack is doing really well. He is doing all the things he is supposed to be doing. As for the technical description of what that is, David will have to fill you in later. What I can tell you is the doc was considering switching him back to the respirator because he is wanting to breathe on his own.

Also, we had a great visit with Scott and Carrie tonight. They spent about 2 hours in the NICU with us. Unfortunately, both Jack and Ella are doing light therapy and have to wear "sunglasses" so they didn't get a good look at their faces.

Well, overall today went OK even with Ella's news. But we are learning quickly, we can never get too comfortable because things change all the time.

Note from David - When our main neo left today, he seemed very heartened by Ella's latest x-ray at 5:30PM. Her emphysema-like condition had cleared very well from the oscillator.

Oh, and yes, they do have special, small diapers. We have a couple and will post a pic later. I think they might fit around my big toe...

Discharged

Kristy was discharged today and we're running home for a while this afternoon.

We spent almost an hour with the doctor team today during their rounds. While Jack is still critically ill, he is doing much better than 30 hours ago. About his only way to get back at his new environment is through pee, so yesterday while the nurse had his diaper off, he took the opportunity to pee all over the sheets and himself. We think he'll end up being a feisty one.

Ella is responding to the oscillator and it appears that the cloudiness in her chest is decreasing.

The neo is going away for 10 days, so we get a new one tomorrow, but he definitely expects us to be here when he returns....

More highs and lows

Kristy got to hold Ella this morning and was ecstatic about it. She'll tell you about it and we'll post pics later. Unfortunately, it was a day early because they're moving her to the oscillator. Apparently, she's developed emphysema in her right lung during the past day. The oscillator will provide a lower level of oxygen but at a higher rate to assist in shrinking a part of her lungs (don't remember the name right now...).

Jack is stable and slowly being weaned in his levels. His blood gases look good and his profusion is much better than yesterday morning. Profusion is the ability shown by the skin to return to a normal state, e.g., push on your skin, it'll turn white then back to normal. Yesterday, his was a bit slow returning to normal rate. Also, his blood pressure was higher, so no need for dopamine.

We're approaching 72 hours and we're enjoying have them with us every minute.

My First Diaper

Today, besides being a roller coaster day, was exciting for me too... I got to change my first diaper.

David and I were visiting Jack and Ella just as they were doing their vital signs and diaper changes. Jack is in a very controlled environment and can't be moved, so I wasn't able to participate with anything. I did get to stroke his tiny feet, but that was all. Ella, however, is able to move much more. When the nurse asked me if I wanted to change Ella's diaper, I can't tell you how much that meant to me.

I know for most people the thought of changing diapers is a nightmare, but for David and I, it is a dream come true. Now, between the two of us, we have probably changed a total of 5 diapers (ever)... so to say we don't know what we're doing is a very accurate statement. To tell you how truly warped our view on diaper changing is, I was so excited because her diaper was a poopy one - how awesome!!

I know, I know... someday I will be so "over" diaper changing, but at this point we think of it as a miracle - yet another in this very long journey.

Tomorrow David and I move into our next "new home." We will officially be released for the maternity ward, but just plan on moving next door to the NICU. Fortunately, Jack and Ella have adjoining rooms, so David and I will each have a couch/bed area to lie down on during our habitation in the NICU.

I could go on and on about how wonderful this place is (Clarian North), but as you read through our blog, you can probably tell how highly we think of the facility and staff. The doctors, nursing staff, and support staff have made a very difficult time run as smoothly as possible. Not only are they phenomenal in their jobs but have made us feel like we are very important and do everything they can to make us feel comfortable.

Thank you for all your prayers and posts... though we don't respond directly to your comments, we definitely read them and our hearts are warmed. Jack and Ella won't get to come home until April, but we are able to face each day with hope because of the incredible people that continue to support and pray for us on this journey.

Almost 48 hours old

Jack and Ella have a couple of hours until the 48 hour mark. We're very excited to reach that milestone. Also, they are both being gradually weaned from their assistance.

Jack's glucose levels were down and up yesterday, but today have stabilized. His blood pressure has returned to normal, so no dopaminine at this time. The biggest worry that the docs have for him is the platelet count and transfers. This could indicate an infection, but they didn't see any other signs of infection. At this time, he is definitely in critical condition, but the neo said that his chances of survival were pretty high, which of course moved Kristy to tears...

Ella's only new issue that they're treating right now relates to the level of activity in her diaphragm. It seemed a bit low so they adjusted the ventilator.

We're on an upswung and hope that this isn't just part of their honeymoon period.

More blood gases and testing at 6PM.

Ella wore herself out

At 2AM this morning, the neo came into our room and recommended that Ella be put on the respirator. She seemed to be getting tired out from the past 36 hours. After some questioning, we concurred. She'll also got a dose of surfactant and responded well to both measures.

Jack is staying fairly stable. He's getting another platelet transfusion this morning.

Rounds are about 10:30.

The rollercoaster

Our docs said that the next while will be a rollercoaster ride and the last 2 days haven proven them correct. I'm a bit out of it, so I apologize if this is incoherent...

Yesterday, Kristy and I were faced with the most difficult decision that we've faced. Since Jack's decelerations were advancing so rapidly, the docs said he would be much better outside than in utero. However, Ella seemed to be doing fine and Kristy's contractions were still minimal. Since the pregnancy wasn't termed a rupture but IUGR (slow growth), even if the contractions increased she could be given magnesium sulfate to assist. On the flip side, if we decided to continue the pregnancy, then they would stop monitoring Jack. Kristy and I huddled for a while and jointly decided that we had to give him a chance.

With the decision made, the rest of the day flew by quickly.

Our main doctor was in Europe for the last couple weeks and flew back home on Saturday night. We asked to call for her advice. Amazingly, she decided to come into the office and run the delivery. We were initially a bit apprehensive about delivering on a Sunday, but the crew of about a dozen were incredible. There was never a moment where we felt we weren't getting the best care possible and there will never be words to express how much gratitude we have for the teams here.

During that time, Kristy's parents were coming down to watch the Colts game (I've never cared so little for one of their losses...), so they waited in the room while Kristy and I went to delivery. Kristy's mom was with her during Claire and Gracie's births, but yesterday she held it together very well.

The delivery process went exceptionally well. We were in and out in about an hour. I assume that by a good start that the neo meant that there wasn't a lot of trauma during delivery. Kristy has a hard time getting an IV, so I can't imagine the difficulty with their small veins and arteries.

After the delivery, Kristy rested for a couple hours and then we went over with both our parents to visit. They had stabilized both Jack and Ella and we went back to the room exhausted, excited, worried, scared, you name it...

Today started about 6:30 when I stopped by to see them. The lady neo (neonatologist is too difficult..) was extremely pleased in how the night progressed. Jack had stabilized on his respirator and Ella was still just using the C-PAP (similar to a sleep apnea device). This was the up part of the day...

It's amazing how many numbers and body parts that are monitored, but in the first couple days, respiration is key. Oxygen levels (usually 97% in adults, 85% in preemies), CO2 levels (don't want these to get too high), breath rates (lower is better) and oxygen assistance (<50 is good) are some of the most important. Basically, the docs want to stabilize levels while weaning them off oxygen assistance.

As today progressed, Jack's levels (especially CO2) were increasing while his assistance was also going up. Also, Ella's levels were stable but her assistance was increasing. So, they moved Jack from the respirator to the oscillator. Instead of injecting oxygen into his lungs (similar to a assisted but normal breath), this device fills his alveoli and then keeps them full of oxygen. The first neo was quite happy that we didn't need to use it overnight, so we were a bit worried when they switched. Also, if Ella's assistance continued to increase, she would need to be intubated. This was the downswing...

This evening, blood gases were taken again. This is a drawing of blood from them to determine the levels noted above. Jack's CO2 levels were much better with the new oscillator and his assistance also declined. Ella also had a decrease in assistance and didn't need to be intubated. We're back on the upswing and Kristy can now take a nap.

Needless to say Kristy has done exceptionally well. She was quite a bit crampy from the c-section, but has been over to see them many times in her wheelchair. She tears up every time that Ella cries. Ella is quite the persnickety baby. She does not like to be annoyed and let's us know. After delivery, the team let us move back into our antepartum room instead of a postpartum one. The antepartum is closer to the NICU and we didn't have to remove our 42 days worth of stuff.

Also, Kristy started pumping today. She is doing great. We got a couple drops on the second one, put it in a syringe and asked the nurses if they could use just a couple drops. They were emphatic in noting that this is like liquid gold to the babies. They won't feed the babies the colostrum for a couple days, but it's great for Kristy to have something to give them during this time.

Our neo told us this morning that a normal preemie will be in the hospital until their normal delivery date, which is April 10th. We were a bit worried, but quite happy that they were even talking about them going home. We can't wait.

On a funny side-note, it had been since Saturday that I had been home, so when Thad stopped by today, Lucy, our Turkish Angora cat, had burrowed her head into the cat food container. Somehow, she got her head stuck and was wearing a cereal container top around the house. She's fine, but we're glad Thad was able to stop by today.

If you got to the bottom of my longest post ever, thanks very much for your support and prayers.

Ella's first cry

Jack and Ella are now over a day old. They are maintaining the current course of action. Jack received his 4th and last dose of surfactant (I finally got the spelling right...) and responded well to it. We'll do a bigger update later, but I wanted to show off her crying ability.

A good start

While talking to the neonatologist today, she said that things were going well. They've made it through their first night on the outside... Jack has responded to his 3rd dose of servactin (sp?) and his oxygen support has lowered considerably. She was quite surprised that a belly line (IV through his umbilical cord) was able to be put into him, but was quite glad about it. Apparently, his umbilical cord was very small. Ella's blood pressure is better, also.

The neonatologist said that she was pleased that "They had a good start".

Day 1

Today, we start the numbering and counting all over.... Along with their births comes a whole new set of worries, numbers, and monitorings. It's breaths/minute and blood pressure rates instead of contractions and heart rates.

However, we're exceedingly thankful for your hopes and prayers that have gotten us to this point. 41 days ago, the prospects were not nearly as bright....

It was an incredible sound this afternoon when we heard Ella cry for the first time after the delivery. Her transition from the womb to the external world seems to be doing well. She didn't even need to be intubated. Jack is a bit behind, as expected, but currently seems to be stable. Right now, he is receiving a platelet transfusion. The next 24-48 hours are critical for them and we have very high hopes for the future. We do appreciate your prayers during this time.

Below are a couple pics from the delivery room.

Jack

Ella

Jack and Ella's Birthday

Jack and Ella were delivered today at 2:39 and 2:40PM. Jack weighed in at 1 lb 3.8 oz and Ella at 1 lb 13 oz. They are currently in the NICU. Kristy is recovering and we expect to be able to go see them in a couple hours. More later.

Today is delivery day

Will post more later.

More decelerations

Jack's decelerations are increasing. He has had 9 in the last 2 1/2 hours. The docs are leaning towards delivering them today.

40 days and 40 nights

Tonight marks our 40th day in the hospital and we are thankful for each moment. Kristy has been strong while maintaining an incredibly positive attitude. We've had many ups and downs and had started to look forward in weeks instead of days. Unfortunately tonight was one of the downs. During the heartbeat monitorings tonight, Jack had a substantial deceleration in his heartbeat and then a rapid aceleration following. The doctor team thinks that it may be a restriction in his blood flow that caused it. Fortunately, the 40 minutes that followed did not show any additional issues so no decisions need to be made tonight.

So... the team will be monitoring Jack and Ella more closely. We have another ultrasound scan scheduled for Monday morning. Also, Kristy now has to lie with a wedge on her back as the weight of the babies can squeeze the aorta and cause a reduced blood flow to Jack and Ella. We are hopeful that this will help, but even more hopeful that our prayers will be answered.

Yet another challenge for our miracle babies...

Week 27

Just a quick note:

Today marks week 27. Five weeks ago, when we were admitted, I didn't know if we'd ever get here. We are living a miracle everyday.

The Doppler readings this afternoon were the same as Monday (which is good). Thursday (27th) will be our next measurement for growth. We're hoping for 2 lbs... but will take any growth we can get.

AGHHHHH

David told me that I had to post today even though I can't think of anything of interest to say, so I guess I'll just say what I'm feeling at the moment:

• I have to order and eat lunch even though I'm not hungry at all.
• I'm up to my eyeballs in insurance (let's see, what's a nice way to put it) crap.
• I want to take a nap, but can't fall asleep.
• I miss the cats so much I could cry.
• The cleaning lady forgot to close the bathroom door, and it is driving me crazy.
• There is nothing on TV, and I don't have the attention span for movies.
• David has started back to work, which has been harder on me than expected.
• My nose has been congested since October.
• I'm tired of my Heparin shot locations bleeding every time I take a shower.
• I'm mad that Obama lost by 2 percentage points in New Hampshire last night, and I was awake to see it.
• I think I'm getting a rash on my stomach from the ultrasound gel and monitor straps.
• Our new neighbors are slobs (I can't see it but David told me about it), and you all know how much that gets to me.

Otherwise, everything is great....

Doppler results

Jack and Ella had their umbilical cord blood flow measured this morning via the ultrasound. From last Thursday's readings to today's, they look to be stable. Jack's is in the abnormal range at 2.0 and Ella's is normal at 1.4. The doc said that a measurement of 4 would be of real concern...

So... what does that mean? We haven't done a lot of research, but it appears that when Jack's heart contracts, there is a short period of time when the blood doesn't flow from the umbilical cord. They will keep monitoring on a 2 x week schedule. We're praying that it is stable or improves, as is definitely possible.

Also, Jack and Ella's fluid levels are good. His fluid has almost increased to her level, so a prayer answered there...

On a side note, we haven't decided whether it would humane to post pictures of my belly to the internet....

That's one big belly

Kristy has now officially (well, at least in our mirror measurements...) exceeded my belly size. Take a look below (I'll spare you the shot of me...).

The weekend has been nice and boring. A couple contractions, but nothing we're worried about. Tomorrow is our next measurements day. We're hoping that Jack's umbilical cord blood flow is even with or better than last Thursday.

A new hope

Kristy and I have insulated ourselves from googling/reading about pregnancy and baby problems over the last 5 weeks. Our doctors keep asking if we want to speak to the neonatologist, but we keep putting it off until later. Our thinking is that we want to keep our hope in the moment. However, while reading the paper today, we saw a story that definitely lifted our spirits. Apparently, Riley delivered a set of quintuplets last October and after 11 weeks, they are all safe and going home. The smallest named Annabelle was delivered at a birth weight of 1 lb 5 oz, almost what Jack weighs now. Here's the story:

http://www.indystar.com/apps/pbcs.dll/article?AID=/20080105/LOCAL/301050001

Week 26 pics

As Kristy promised, here are a couple of pics from the 26 week ultrasound....

Jack


Ella with Jack kneeing her...

Holding Steady

It feels strange writing again, but David "put his foot down" today and told me it was time to get back on the horse...

Our 26 week appointment was today and overall, it was good.

Ella is still looking wonderful though she is 2 weeks behind the "normal" and came in weighing 1lb 8oz. She posed for us during the 4D scan, so we've got some good pictures of her. I'll have David post them sometime soon.

Jack has grown steadily since the last measurement which was great news!! He is still 3 weeks behind "normal" but has stayed consistent. He weighed in at 1lb 2oz. His amniotic fluid measured at its highest volume since we were admitted. I got a big high-five from L because he had fluid all around him and had a full bladder. We got a couple of 4D pictures of him this time, but they are a little distorted.

Our newest concern is the blood flow through the umbilical cord. Jack's is a little sluggish which the doc says is probably the reason for the slow growth. Again, as long as it stays consistent, we're good. We are having another scan on Monday just to keep an eye on this.

Anyway, David and I feel like everything is going as well as it could right now. We cross off each day as it goes by and are uplifted by it. Thanks for all the prayers and kind words that you've given us over this very difficult time. Thanks to Mom and Dad W. for spending New Years Eve with us, Kim for cheering me up and bringing me a baby book, Mom and Dad K. for bringing Sam and Ryan for a visit before they head back to Arkansas, and Thad, Bobbi, and Emma for the great waffle breakfast and Pokemon play time!

25 minutes to week 26

We have our appointment at 11:30 tomorrow. We'll let you know how it goes... Thanks again for your thoughts and prayers.