Two Weeks

osted Apr 29, 2007 2:57pm

We are happy to say Elizabeth is two weeks old today, but she had us on a roller coaster ride all weekend.

Friday morning, the doctors were a little concerned about her leg. It was a little blue, when they pulled the line out of her belly button; it caused an artery to spasm which restricted blood flow to her leg. They did an ultrasound to check for clots and put nitroglycerin on her skin to help blood flow. A few hours latter everything looked great.

Friday night my plan was to have a short visit with Elizabeth and then go to Kroger. When I got there five people were around her bed, usually never a good sign. They told me they thought that Elizabeth may have had a seizure. Well, as you can imagine my quick visit lasted several hours and Kroger had to wait. Elizabeth was a little problematic with her vent settings, but there were no signs of more seizures. The doctors said that it was most likely that her immature nervous system was just twitching; there were really no reason for any seizures. The doctor promised to call if she had any more seizures. When I left she was happy and sleeping on her tummy for the first time. Elizabeth showed us all what a strong little girl she really is. While on her tummy she pushed her little butt in the air like she was trying to crawl, I couldn’t believe it!

Saturday morning when I called to check on her, the nurse said Elizabeth was a little fragile that morning and needed a lot of oxygen between 75 and 100%, she usually is in the 30-40% range. They also started her on antibiotics for a possible infection.
When I got to the hospital an hour or so latter, Elizabeth had made a remarkable turn around. The doctor said that her lungs had collapsed and that they moved up her vent settings, and she was improving with that, her oxygen had been turned down also. They weren’t very worried about infection any more, but were treating her until her blood tests came back to be safe. The nurses said that Elizabeth was a wild girl that morning and she must not feel too bad to be moving so much. When I left I told Elizabeth no more bad reports!

Later that afternoon when I called, the nurse told me Elizabeth was doing wonderfully! That was so much nicer to hear. Elizabeth was down to 25% oxygen, we breathe 21%, so everybody was very happy with that and all of Elizabeth’s numbers looked good too.

Today she is still doing well, her nurse told “she was as good as gold” and all her number look good.
Due to her busy weekend, Elizabeth has not started getting any food yet. Hopefully, if she behaves herself it will be soon.

p.s. I did make it to the grocery store Saturday evening!

First Diaper

Posted Apr 26, 2007 7:48pm

Elizabeth is still stable. Today they pulled the line out of her belly button, the longer it says in the higher the risk for infection. Infection, of any kind, is her greatest risk right now. Elizabeth is scheduled for her fist feed tomorrow. She will get a little less than 1cc in her feeding tube every 3 hours or so. This will help to "prime her gut" and get it ready for larger amounts in a few weeks. One of the nurses told us that all babies have trouble when they start with food and we should be ready for some kind of problem. Elizabeth will be given breast milk (I am pumping all the time!)which should be easier for her and cause less problems as well as give her antibodies that she missed getting from coming so early.
Last night I changed her diaper and took her temp for the first time. It was a little scary and a lot harder than I thought it would be. I consider myself a pro at diaper changing and I had a hard time with her little bottom. Elizabeth wasn't very happy about getting changed, she kicked and moved the whole time which made it more of a nerve racking experience. I am sure that as I do it more it will get easier each time.

At home we are trying to find our new "normal". I have no idea who left American Idol or anything else outside of our house and the NICU. There doesn't seem to be time for the "real world". I have yet to get to the store, hopefully I will try to work that in tomorrow. Ava seems to be dealing well with everything. Our biggest problem with her is keeping her dressed and our toothbrushes out of the toilet!

Please keep praying for Elizabeth, she has a long way to go, but she is a little miracle and we plan on her keeping that course!

Still the Same

Posted Apr 25, 2007 8:41am

Elizabeth is still doing about the same.
She is using more oxygen in her vent, but other than that there hasn't been much change. Her brain ultrasound is stable, so that means there hasn't been any more bleeds which is good news.
More latter

One Week

Posted Apr 22, 2007 6:01pm

Elizabeth is one week old today.
She is still doing about the same. They have had to give her a little more support on her vent, but say that it is typical for a baby her age. Elizabeth's skin looks really good, there isn't much breakdown which is good news, her skin helps protect her from infection. There isn't much else to report, which is good. She has a brain ultrasound tomorrow, so we are hopeful that it will have good results. We are all just taking it day by day which is all we can do. Please continue your prayers for our little one, we know that they are working!

Elizabeth holding my finger

Day 6

Elizabeth is developing quite a personality already. She seems to be as opinionated as her big sister Ava. Elizabeth was not a happy girl during her ultrasound; the nurse told me that Elizabeth tried to push the wand away and then got the gel all over her face and hair. The good news is that the ultrasound showed that the duct opening in her heart has gotten much smaller. For now they are just going to leave it alone, it could get larger again or close all the way. Elizabeth is also showing signs that she may open her eyes soon, every once in a while she raises her eyebrows up and down.

I had my first dose of life in the NICU this afternoon. While the nurse and respiratory therapist were checking things and moving little Elizabeth, her stats dropped. They very calmly patted her feet and checked all her things and Elizabeth was fine. I on the other hand had to sit down as I watched after feeling faint. Afterward the nurse assured me that what had happened was routine and that moving a little preemie takes a lot out of them and it takes a few seconds to get their center back. It took me some time too!
The new picture of Elizabeth was taken tonight, it really shows how small she is. After the nurse checked all Elizabeth’s lines and tubes she had me put my hands on Elizabeth to calm her down. Elizabeth curled up and pushed her little feet into my hands and relaxed. Each time I tried to take my hands away, she kicked her feet and waved her arm. It was nice to know that she recognizes her mothers touch.

We are continually thankful for all the support and prayers we have received from so many people.

Day 5

All is well
Elizabeth continues to remain stable. They had told us to expect a big backward slide in the first 96 hours, which we are just past. So far so good. The doctor told me this afternoon that she is doing remarkably well, but still has a long way to go and many hurdles to cross. She will have an ultrasound on her heart tomorrow, they are checking to see if a duct has closed (this usually closes at birth on term babies). They will give her a round or two of a medication to help it close, if not she may need to have surgery. Please continue your prayers, we know that there are so many people out there saying prayers for our little Elizabeth, many whom we have never met, thank you!

Day 4 part 2

Just got home
Elizabeth is pretty much still the same, we are happy with that for right now.
We forgot to visit the fish while we were there, Ava reminded us on the way out that she wasn't happy about it. In the parking lot Matt asked Ava who we saw at the hospital. Her reply..."Not the fish!"

Day 4

We all visited Elizabeth this morning and she is still holding her own. Ava has been talking about her baby sister and wanted to see her again. Matt took her in for a while today and they talked about her tiny hands and tiny feet and very warm crib. Then he sat down and read them both a story.

The staff frequently remind us that she is still critically ill, but is stable. Somebody told me (I think the doctor) that she is doing remarkably well given her size and age. Given her circumstances, they expect her to require the most care of any of the babies in the NICU, but she hasn’t required much more than minor adjustments and routine NICU care. They did an ultrasound of her brain this morning and the doctor told us that she didn’t see any major bleeds, and that most of these happen with in the first 96 hours, which we are almost past. An ultrasound 2 days ago showed that Elizabeth does have a minor bleed on her right side. It is a grade 1 out of a range of 1-4 (4 is the worst). It has not gotten worse which is very good news. Elizabeth is also breathing room air thru her vent. They said that many babies need 100% oxygen, so this is another bit of good news. We always have to remember that anything can change and they tell us its two steps forward one step back (or three).
Please keep the prayers coming, they are working!!

I will try to put some more pictures up soon, we want to take some that better show how small she really is. I will never again look at a 7lb newborn and think it’s tiny!

Day 3

Posted Apr 17, 2007 9:28pm

Day 3
Elizabeth continues to remain stable, like a good little patient. The doctor on duty tonight was happy with most of her blood levels. She had another blood transfusion and will be getting platelets tonight. This is not unexpected; they draw blood every few hours and she is too small to keep up with what they take out. Fortunately, all of the blood draws come from an arterial line so she is not being poked all the time. Her eyes are still closed (like a kitten) and she will open them in her own time. We are all looking forward to seeing those pretty eyes.
We can’t say enough about the NICU nurses, doctors, and all the other staff. They are all awesome. Knowing that she is getting excellent care takes one huge weight away from our shoulders. The nurses take the time to explain everything they are doing, what to expect next, and answer any questions we have and some we don’t even know to ask. While I am on the topic of the St. Joe staff, the group in labor and delivery who spent a week with me were awesome too. Their kindness and compassion made the whole situation a little more bearable.

Ava visited Elizabeth for the first time tonight and wasn’t at all fazed by the experience. She was very interested in her “special bed” and the nurse let Ava feel how warm it is (they keep her in a very warm and humid environment because her skin is so thin that her fluids just evaporate. Her “little house” is about 85% humidy and 98 degrees). Ava talked all the way out of the hospital how Baby Elizabeth had lots of growing to do.

We will continue to update this Carepage so people can follow our tiny little girl’s progress. There’s a lot more to write, but as you can imagine, we’re a little drained right now. Thank you all again for the continued prayers and support. They mean more than you can know. We profoundly believe that the power of prayer has played a major role as things developed, and Elizabeth’s continued progress is nothing short of miracle after miracle.

First Update From Sarah- Elizabeth Grace

Hello all (this is Sarah)
I am home now, I came home about 10pm, tonight (Monday) which was very bittersweet. I am happy to be home, but sad to leave, and all kinds of other emotions that I can't describe.
I know that there are some new people on this list, in all the drama Matt missed some people so, take a deep breath and prepare yourself for a big shock and story!
We have officially change the spelling of her name to Elizabeth Grace (too many people were writing it that way already (we didn't want her telling people "no with an s" all her life!) A minor detail!
Elizabeth, as of 9pm was still doing ok, we can never really say that she is doing well she is so small (her foot is as long as my finger tip) She is slowly showing signs that the honeymoon is coming to an end, but things could be much worse given her "age". So please don't stop those prayers they are truly working! Not many 23 weekers make it thru delivery and she is almost 2 days old!
Thanks to all of you for all the e-mails, calls, prayers, and offers of help. They are truly appreciated, and many people will be taken up on their offers! I have no idea how we are going to manage this all and know that we couldn't with out the support and prayers of all of you. We are grateful for all the people praying for us and Elizabeth, many who we have never met, please don't stop. Miracles happen and have happened this week already! We have truly seen God's "Grace" already.
Physically I feel ok, my body is starting to come out of shock and I am sure I will feel more tomorrow!
I am tired an have to go pump (they will store milk until she is ready for it in a few weeks) so goodnight and thanks again. We will keep you posted on any major developments

-- Matt, Sarah, Ava, and Elizabeth

Elizabeth Grace Day 1

Elisabeth Grace

When Ava and I arrived for our daily visit yesterday evening, Sarah was having contractions that were getting closer and more intense. Ava spent a little time with mommy and then Sarah's sister came to get Ava for the night. She did her very best to carry the baby as long as possible, and the few extra days we got were crucial. The doctors were all in agreement that Sarah's body was going into labor as a result of the infection they had been suspecting and felt it was in her best interest not to intervene. We were moved shortly after that to a labor and delivery room to prepare for the birth. To give the baby the best chances we were moved to the operating room for the delivery because it is adjacent to the Neonatal Intensive Care Unit (NICU).

Sarah gave birth to a precious little baby girl named Elisabeth Grace at 2:03 am. Elisabeth weighed 1 lb 3 oz and measured 10 inches long. She was immediately taken to the NICU for treatment. She got a breathing tube installed to assist her lungs and started to get her oxygen levels up just before we would have had to face some hard decisions. She had a strong pulse. With her oxygen levels up, our next worry was her CO2 levels which were too high. Those soon worked their way back to normal levels. I watched in the treatment room for a few hours as the medical staff installed lines, ran tests, took measurements. We also had her baptized by the hospital chaplain during this time. Elisabeth has been relatively stable since then. She is constantly being monitored and tended to. All things considered, she is in good shape. After most of the work on her was done the neonatologist told me that every procedure she needed to do went smoothly, which was nothing short of miraculous in her opinion. Her first 24 hours should be fairly good. The staff calls this the honeymoon period. The next 48 to 72 hours after the honeymoon period will be very important.

Sarah is still recovering. We didn't get a chance to rest today until about 6, so as you can imagine we're both pretty spent right now. Sarah looks to be recovering as she should. We're happy that Elisabeth is doing well, but understandably anxious. We have a long road ahead. Elisabeth will be on a ventilator for at least a month and faces a lot of challenges as she works to finish developing. She's a fighter. She's done quite a lot of kicking and squirming, and we're hopeful she'll be continue being feisty.

Please keep us in your prayers

Some Good News

Good news is more fun to share, so I wanted to be sure and get this message out to everyone as soon as I could. We got our first culture results back this afternoon and it was still negative. That means we get another day. We'll get the final result back tomorrow. Sarah's Dr. gave her some antibiotics today, and hopefully they will help. She had a fever again last night, but doesn't seem to have had one since.

She wanted me to pass along another round of thanks for all of the prayers. Her doctors have told her that her case is very frustrating because there really isn't anything they have been able to do to treat her. She's getting better and we are thankful.

Three Days later

This hasn't been an easy week, but we still consider ourselves fortunate. Sarah is stable, has made it to 23 weeks pregnant, and is in the skilled and caring hands of an excellent medical staff. Her bleeding continues and Thursday brought quite a scare for us. We were about an hour away from an emergency C section with serious concerns about the baby's chances. Thank God, she got better and has been relatively stable since. Sarah also developed an intermittent fever yesterday. It could just be a virus but there is concern about a possible uterine infection. If that's the case, the only option is to take the baby. To test for it they did an amniocentesis today. The most important result was a bacteria test which came back negative. However, the white cell count came back high and the glucose level was low, both of which can be signs of infection. The doctor was concerned by this so he had them re-run the bacteria test, but still it came back clean. He cleared Sarah to eat dinner which was her first meal since Thursday morning and the highlight of her day.
Passing the bacteria test means we are ok for tonight, but there are still cultures being checked. We get one result tomorrow afternoon and a second result Sunday afternoon. If either is positive we're back to needing a C section. If they are both negative we continue to sit and wait. Waiting is good. Every day we wait the baby's lungs will grow and she will have a better chance for survival. Sarah also has a better chance of healing and taking the baby closer towards full term. In the best case scenario Sarah has a virus and will get over it in the next day or so. That will take care of her fever. After that she can get some steroids to help the baby's lungs develop and make it until 24 weeks old where survival rates really start to improve.
Ava has been spending lots of time with Grandma and her aunts. She's doing great and is having all kinds of fun. She visits mommy every day in the hospital and will do a craft, color or watch a movie while we're there. She also enjoys going out to look for nurses and see the 3 story water fountain in the lobby.

Thank you all for all of the support we've gotten, especially the prayers. Keep them coming. Every time a scare comes up I picture us surrounded by the people who are praying for us and it helps me.

-- Matt

Admitted

This is the First e-mail that Matt sent out to friends and family

Hi everyone. I wanted to let you know that Sarah has been admitted to St. Joe Hospital for observation. She had some significant bleeding yesterday evening so we went in and they kept her overnight. It has gotten better, but is still a concern. When we spoke to her Dr. this morning he indicated there was a chance she could come home tonight or tomorrow morning, if things stayed the same or improved. She did pretty good today, but I think her bleeding picked up a little this evening. Tonight, one of the nurses told her it was likely she'd be around for a lot longer - more like weeks. There's a good chance that the bleeding will heal over the next few days with bed rest and she can carry the baby to full term. The baby is only 22 weeks old right now, so we really need her get better.

One of my biggest concerns is keeping her spirits up so prayers, calls, cards, and visits would be appreciated