Elizabeth is still getting good reports from the doctors and nurses.
Her feeds are going up every 12 hours now until she reaches 15cc (1/2 an oz)right now she is up to 11cc! She will be off all IV fats and nutrition tonight and her big IV should be out by the weekend!
Elizabeth is growing now up to 1lb and 11 1/2oz! My doctor stopped by to visit me and was surprised to see how much she has grown in little over a week.
Everything is still about the same. The doctors tell us no news is good news and they don't have much to say. One of her doctors told me that she is amazed that Elizabeth is doing so well given her small start. She said that it is mircalous that she is even able to go on her nasal canulla. Today Elizabeth is up to 8cc feedings!
Elizabeth gave us a small scare this morning. She was having what they call "events". This means that Elizabeth had a drop in heart rate called a "brady" or a drop in her oxygen level a "desat". Elizabeth usually doesn't have bradys and had some Monday and today. She also had a higher temp than they would like. Luckly Elizabeth's cafeine level was low causing her events and her isolette was over heating making her warm.
All is well God is great!
Elizabeth is doing well. She has had a great week.
On Wednesday afternoon her feeds were increased to 2cc, she was doing well with that and was bumped up to 3cc on Thursday morning, and today she is getting 4cc. Her goal is 13cc, as long as Elizabeth is tolerating each feed well she will be increased by 1cc each day. So far so good.
Her CPAP pressure was taken down from 6 to 5 and that is as low as they will go. Her next step is to be weaned off the CPAP very slowly onto a nasal cannula. They will do this by taking her off the CPAP for a short time each day and increasing the time off as Elizabeth tolerates it . On Wednesday Elizabeth was taken off CPAP for one hour a day while I held her. It was nice to see her whole face! She sure is a pretty baby! Starting today Elizabeth will be on nasal canulla for 1 1/2 hours twice a day while being held.
Apparently Elizabeth feels that she has been in the NICU for a while and now knows how to operate some of her equipment. The past few day Elizabeth has removed her feeding tube several times each day and removed her CPAP too.
Have a great weekend everybody!
Just a quick update
Elizabeth is still doing well on her CPAP, one of her doctors
called her a "mighty mite"
Elizabeth has grown, she now is now about 1lb 8oz and 13 inches
long. What a big girl! She is also doing well digestive wise, they
have uped her feeds to 2cc every 3 hours to see how she does with
that. They are also taking blood tests less often, which is good
news; both because she doesn't get a stick and is more
stable.
I will post more latter
Elizabeth is still doing well on her CPAP. She has surprised everyone, who thought for sure she would be back on her vent after a day of CPAP (of course she can go back at any time, her lungs are still very premature). Now that Elizabeth is off the vent we are able to hold her, today I kangarooed with her for the third time. Matt is planning on holding Elizabeth for the first time tomorrow.
The big news of the day is that Elizabeth has finally pooped! Never has this event been more celebrated! She had three dirty diapers, two while I was there so I helped to change her. Elizabeth is still tolerating her feedings for the most part, now that her digestive tract is moving better, hopefully she will improve more.
A few people have asked if Elizabeth has opened her other eye. She has, she did it on the same day just later that night. The following day was her heart surgery so it had slipped my mind and I never posted that event.
As I watched Elizabeth sleep on my chest today, I was struck by the thought that I was holding a true miracle. Thank you all so much for your continued prayers and support, it means the world to all of us. Elizabeth is a testament to power of prayer, as one of our pastors, Pastor Mike, said “God is still in the miracle business.” How true that is!
So far so good. Elizabeth really seems to be doing well on the CPAP, her oxygen requirement is really low around 25%. She does look a little funny in the contraption. The down side of CPAP is that it blows a lot of air into her tummy, so she is having a few problems digesting her food with all of the extra air in there. With her tube out now, Elizabeth is able to cry. I heard her make a noise for the first time last night, it was a very quite little squeak. Her vocal chords are swollen from the tube, she will get louder as she recovers and gets stronger.
Yesterday Elizabeth Grace turned a month old. This itty bitty baby girl has been thru more in her first month of life than most people in their entire life. Here is a short and I am sure not complete list (I am sure that the insurance company has a much more complete list!)
Born 17 weeks early, weighing 1lb3oz and 10inches long
Countless heel sticks and blood draws for blood test
At least 6 (more I think) blood and platelet transfusions
Countless X-rays (she had 3 today)
2 chest tubes
1 heart surgery
1 septic infection
She has been on 2 ventilator machines, 2 CPAP machines
2 arterial lines (which are great, they can draw blood with out a stick)
0 poops (we are still waiting for that!)
Lots of loving and skilled nurses, doctors, respiratory therapists, and other support staff
2281 hits on her website as of this posting
More prayers from around the world than we will ever know
One beautiful miracle of God
On CPAP
Happy Mothers Day
Elizabeth is 4 weeks old today. It is hard to believe that it has been 5 weeks since our lives have been flipped upside down. It seems like it was both just yesterday and has been going on forever.
We have had a busy week in the NICU. Elizabeth has been started on steroids to help her lungs. Once again she had a collapsed lung and had an air leak. The leak was caused by part of her lungs over inflating and some of the alveoli burst, leaking air into her chest cavity. On Friday morning, after trying non-invasive measures to treat this, the doctor had to put a chest tube in to let the air out; this is her second chest tube (the first was after her surgery). With the chest tube in, steroids, and heavy duty antibiotics on board Elizabeth is doing much better. The doctor hopes that she is turning the corner.
Today was a great day for Elizabeth, her nurse says that she is a different baby then she was a few days ago. She is requiring less oxygen than she has since before her surgery and her vent settings have been coming down. Elizabeth’s condition has improved enough to be given some food again. The order for now is 1cc every 3 hours. So far she has had “two servings” and tolerated them very well. She is given the milk through a tube that goes to her stomach, after each feed the nurses check to see how the milk was digested. So far so good, Elizabeth has tolerated and digested the food so far. Hopefully she will continue this trend.
Elizabeth looks bigger to me, she has gained some ounces but it is hard to tell what is realy weight is with the changing and adding of various tubes. One of her nurses who had been on vacation for two weeks also thinks that she looks bigger and more mature. Elizabeth’s hair is growing, dark black, at the rate it seems to be growing she might need a hair cut before she comes home.
Hope everyone had a nice weekend
I also must mention how fabulous and amazing Matt's brother John is and our sister-in-law Janessa. They thought to send me some beautiful flowers for Mother's Day just in case Matt wasn't able to get out and get something. Thanks to you both we love you!
Elizabeth is stable tonight. Her doctor said that the infection has peaked and right now we are just taking baby steps to get her better.
I posted lots of pictures tonight. Ava and I went shopping today and after much deliberation Ava choose a little teddy bear to give to Elizabeth. She was very happy to take it to Elizabeth tonight. A few pictures show Elizabeth’s size. Matt put his wedding ring on her arm. The diaper and blood pressure cuff are both a little big on her; it is hard to believe that they are even made that small!
Elizabeth blood pressure cuff
Elizabeth's diaper (too big for her)
Ava bringing Elizabeth a new bear
Here you go baby
Elizabeth with her new bear
Rough Day
Elizabeth is very sick today. She has been put on a different type of vent that should help her lungs rest. It looks like her lungs have collapsed and she probably has a pneumonia. When I arrived this morning she wasn’t doing well and the doctor was very concerned about her. Her oxygen requirement was 100% (she usually sits under 40%) and her O2 saturation wasn’t good at all. They have started her on antibiotics and adjusted some things on her vent. About four hours latter Elizabeth had improved and was requiring less oxygen. An x-ray also showed some improvement.
When I left, about five hours after my planned departure, Elizabeth had made great improvements. She is back down to around 40% oxygen. One of her nurses said she had made a 50% improvement. Of course we want that other 50% and are praying for that. The doctor says that there are still some trick up their sleeves if she goes backwards.
It amazes me at the amount of prayers this little girl is getting. Someone told my mom that during their church service yesterday two people who didn’t know each other asked for prayers for a 23 week preemie. It turned out that both these people were asking for prayers for Elizabeth! Keep praying! Thanks!
P.S. It is national nurses week, give one a hug and thank them for all they do. I don’t know what we would do without the wonderful nurses Elizabeth has.
Elizabeth is continuing to recover from her surgery. Her nurses are keeping her comfortable with morphine, giving it to her as often as they can. Elizabeth seems to be pretty out, she is very still, every once in a while she will wiggle her toes or peak at me. This morning her right lung showed a little collapse and she was having a hard time getting rid of her CO2, they have adjusted her ventilator and she seems to be improving. This is normal to happen with the surgery; the surgeon told us that the few days after surgery babies usually need a little more lung support. Her chest tube should come out tomorrow, this will help her be more comfortable, the nurses are limited in the ways she can be positioned with it in. The incision was made on her left side, there should only be a small scar and will hardly be noticeable as she gets older.
Elizabeth’s job for today is to pee. She has had a dry diaper all day and most of the night. All of her labs are coming back normal, but they have put her on dopamine to help her urinate. During her surgery Elizabeth did not seem to have this problem, she peed on the table during her surgery!
When she stabilizes and they can hear bowel sounds Elizabeth’s feeds will start again. Hopefully this will be soon so she can put on some weight and get things “going”. Back to the topic of her diaper again, Elizabeth has not passed any stool yet and they are all anxious for her to get that little meconium plug out. On a much more pleasant topic, I should also get to “Kangaroo” her again sometime next week if all goes well.
Thank you to everyone for all of the support from calls, cards, e-mails, meals, baby sitting and most importantly your prayers. We know that God is holding little Elizabeth in his hands and that all of the prayers are being heard and answered.
Two and a half weeks after her birth, I got to hold Elizabeth today for the first time. They put her on my chest skin to skin, this is called kangaroo care. Her nurse told me that they would let me hold her as long as Elizabeth tolerated it up to an hour. Elizabeth was her usually feisty self, wiggling and moving a lot but did great. I was able to hold her the whole hour and the last 15 minutes or so she seemed to have fallen asleep. I was surprised how soft her skin felt. While she was getting put back in her bed and all her lines and tubes arranged the respiratory therapist thought she saw her left eye open just a slit. She said that by tonight it might be open. Then Elizabeth peaked again, I went to the other side of her bed for a better look and she opened her left eye almost all the way! I was so happy that I got to see her open her eye, I thought for sure that she would do that while I was gone. The right eye should follow any time now. Her eye color is that dark slate blue that most babies have. Elizabeth also got 1cc (30cc = 1oz) of breast milk for lunch today.
The bad news we got today was that the duct in her heart has remained unchanged. Elizabeth will have to have the surgery next week to clamp it shut, probably Monday or Tuesday morning. I will let everyone know when I have more information.
Please continue to pray for our little girl. We really appreciate all the support from everyone.
The First Time I Held Elizabeth
Elizabeth is still holding her own.
She had a bigger breathing tube put in yesterday and seems to like it; her alarms have been going off a lot less. Elizabeth did great while they switch the tubes, even taking a few breaths on her own. She had another brain ultrasound and that came back stable again, wonderful news! The open duct in her heart (PDA) has gotten bigger. They are giving Elizabeth another round of medication and hoping that will close it, please pray that it works. Tomorrow they will do another heart echo and if the PDA is still open, she will need to have surgery to close it. Depending on how things look tomorrow she might get to start on real food.
