Saturday, June 27, 2009

Fire Girl

While at the NICU tonight we received a phone call to come home ASAP. When Jake got home he found out the kids had started a fire!!! Here's the culprit...
The kids explained what happened when Jansen threw the green ball into the lamp.
Jansen's words..."duh, duh, duh, duh, duh, duh, duh..." that's about it.
Reesa's words, "mommy we started a fire with the green ball!" She was so proud.
Poor Grandma Sue didn't think it was funny. She said she left the room for a minute, and when she came back the flames were two feet high, all the alarms were going off. She unplugged the lamp, bolted to the front door, and proceeded to trip over the lamp while the flames continued on. She threw the lamp down the steps and hosed it down... while Jansen ran away, and Reesa danced around asking to do it again. They thought it was AWESOME!

Just a normal day at the Geyer house!
I deal with this everyday and no one will even believe it!
This kid is a real juggernaut! Check out those bruises...

Jansen's war cry.

Skin to skin time with mom. Just looking at these pictures makes me want to cry. Mitchell is so sweet and cuddly. Even though he has many uncomfortable things hooked up to him, he falls right asleep in my arms EVERY TIME!
Our nurse Kim called this "packed and ready to ship!" She couldn't get Mitchell to settle down so she filled his bed with blankets so he couldn't wiggle around. Then she took these pictures for me since we couldn't be there to show us how much he liked it!
Grandma Sue got to visit Mitchell

Dad got to give Mitchell a name and a blessing last night. It was such a special experience. The NICU made an exception for us, and let Aaron and Chelsey come to the bedside.
(Only 2 allowed at a time)

Update: Mitchell's condition has remained the same, if anything has worsened some. They have had to increase his pressure on the CPAP and considering putting him back on the ventilator. Ughh. Yesterday I spoke with the cardiologist who told us that Mitchell's PDA is very HUGE. It's the same size as his pulmonary artery. It's not causing many problems now, but as the weeks go by it could become a serious problem. They are recommending we have it surgically ligated. Typically this is a simple procedure, that has a very successful outcome. HOWEVER, 2 reasons why this is very serious for Mitchell. #1. The PDA is a very large size and when closed could substantially increase the pressure in his lungs. #2. He already has bad lungs and they are going to have to temporarily deflate one side to get to the PDA. They don't know how this stress to his body will make him react. He has never responded well to any stress, making this procedure life-threatening.

This surgery is usually done by a pediatric surgeon, but the cardiologist felt Mitchell needed someone more specialized. She spoke with a pediatric cardio-thoracic surgeon at the University of Virginia and asked if he would consider doing this surgery. Since he is the only specialist in the state of Virginia, he hand picks his cases. After reviewing Mitchell's echo he agreed to do it!!!

Mitchell will be transported to UVA (70 miles away) as soon as a bed becomes available there. We will have one hours notice. The plan... we don't exactly know at this point. I want to go and stay with Mitchell at UVA, but still have 2 other kids to care for.

This was a very hard and scary decision to make. The cardiologist cried with me, and told me this decision would make any mother cry. We are so scared for Mitchell, but remain convinced that he has a special purpose here on this earth. It's up to the Lord how long he will be with us. He has been a tremendous blessing to our family already. We feel so lucky to be his parents.

When talking to Jake, we realized we have never before felt so strong when facing a challenge. We honestly feel that it is because so many people are praying for our family. We feel strengthened and loved daily. It truly does make a difference. Thank you so very much.

Thursday, June 25, 2009

Naked baby

Mitchell has a horrible diaper rash and today I was asking the nurse what else we could try. She suggested leaving off his diaper and putting him under a light to help. So after we started settling him down for the night, I couldn't stop chuckling at how funny he looks. He fell right asleep, typical boy... loves to be naked! (P.S. Jake made a playlist of classical musical for Mitchell on his IPod. This kid is SPOILED! and he deserves to be!)
Mitchell needed more support so they increased the pressure on his CPAP this morning, took him off steroids and took a chest x-ray. The x-ray showed a cloudy image and made the dr's suspect an infection so they started him on antibiotics. It was most likely just swelling from water retention. The blood work confirmed no sign of infection, so they will discontinue the antibiotics after the blood culture comes back.

They also did another echo this morning showing no improvements. They are thinking the next best option would be surgery to close his PDA. Although this will not cure him, it may improve his condition. This is sad because he will need to be transferred to another hospital, maybe over an hour away!!! and I thought 20 minutes was a rough commute.

I feel SO blessed to have so many people reaching out to us to comfort us in this time of need. We are so lucky to have family and friends like YOU reading this. Thank you so much!!!

Mitchell and Mom
This sweet little boy loves to be held. He stops fussing almost immediately. It's now to the point where they let me hold him almost everyday. (It's that I help him impove so much... or they just feel too sorry for me to tell me no now.

Wednesday, June 24, 2009

Bad news/good news

So, we spoke w/ the cardiologist on Monday evening - 6/22, and since that time we have been very worried. He said that they have now taken 4 echo's and each one has shown very little if any improvement. He basically stated that he is at the point where he is considering changing his diagnosis from Persistent pulmonary hypertension to primary pulmonary hypertension. Meaning that this is a condition that he was born with and as he grows the condition will continue on. Primary pulmonary hypertension is a diagnosis that is not compatible w/ life and eventually results in heart failure. There is no way to know how long that will take, but he said a great scenario would be 3-4 yrs - w/ around the clock monitoring and no other complications. But primary has been responsible for it's fair share of early deaths as well.

Apparently it is an exclusionary diagnosis. It seems as if he was preparing us for a dismal outcome. He isn't sure if that is exactly what he has, however babies w/ Persistent pulmonary hypertension typically resolve w/in 5-7 days, and we are now 2 weeks beyond that. He stated that primary is a very rare condition, and although it could possibly be another condition out there, the chance of that being the case is very unlikely. He did say that there have been cases of babies w/ Persistent that have taken a full 4-5 weeks to overcome the condition and transition into a normal healthy life. That is very rare in of itself. We have been worried all along, but had no reason to believe that our son wasn't going to improve, because he has improved quite a bit seeing where he was a short three weeks ago. This has been an exceptional weight to bear. Kellie and I have been extremely distraught and have had a difficult time coping with the news. Since Monday, we have grown so close together and are leaning on each other and family as best we can.

Today we caught our neonatologist in the elevator, and he brought us into his office to give us his take on the whole thing. He didn't deny the fact that our son may very well have primary pulmonary hypertension, he just stated that we need not lose hope yet. He stated that they still have a good two weeks before they will be out of ideas on how to improve his condition. Right now he is on steroids to help clear up the massive amt of inflammation he is suffering from the ventilator that supported him for 2 weeks. That may be the silver bullet. There is a surgery that can be done to aid in the erratic blood flow from the heart to the lungs, that may also improve the condition. However, there is no way to test for primary pumonary hypertension and only time can tell. They are very hopeful that they will get him off the CPAP machine w/in 3 days to a week from now and have him on the cannula full time. Once they get his feeding down then he will come home to us. He will most likely be on O2 support for many months, through the cannula, if not his entire life - once again it just depends on what his true condition is. They are taking echocardiograms twice a week to follow the improvement which tells them if the hypertension still exists.

One hope is that he will also grow out of it. For example, the damaged lung tissue he has now, potentially from the ventilator, may never recover, but 6 months from now he will have three times the lung tissue he has now, and if it isn't primary hypertension then the new lung tissue should be sufficient to help him overcome the disease. However if it is primary hypertension, then the new lung tissue will grow like the junky stuff he has now - and we will eventually lose him.

We are praying for a miracle to happen if it is the will of the Lord. We have already been tremendously blessed by having Mitchell as a part of our family, and pray that he will be with us for a long time.

We will be making posts ever so often at this point and hope to be able to keep all who are interested up to date.

Sunday, June 21, 2009

Day 19 Sunday

Mitchell had a good night, so they decided it was time to make him work harder... They moved him back to a nasal cannula. Look at how cute he is!!!
Although I know it's good for him, and the only thing to make him better, it is SO HARD to watch him struggle so much. You can just see the retractions in his chest with every breath. So of course I spent the morning crying for him.
Annie finally got to come and meet Mitchell. She probably won't see him again until he's much bigger!
Annie told me before she left Reesa said, "good-bye Hannah and gave her a big hug." I guess everyone Reesa loves is called Hannah. Annie also said she felt she had made good progress with Jansen because Annie was sitting and Jansen came up behind her, put his head on her shoulder and gave her a big hug. We're all going to miss you Annie! Thanks for leaving your girls AND your husband (on Father's Day) to help us out.

Here's the most disappointing sign I found today at the NICU. I called before I came, got there and was told to wait a few minutes, went to pump and was told to come back in 10 minutes. When I came 20 minutes later I saw this...
It's so heart breaking because you know this means there is a baby not doing well, needing everyone's attention, and you just hope it's not your baby!

Day 18 Saturday

We started Mitchell's baby massage, and boy does he love it!
We're only doing arms right now, but it's so fun to get to touch him. I love it!
Look what dad finally got to do...! Here's Jake holding Mitchell for the first time.
Who do you think loved it more, baby?...
or dad?
What a great day for everyone!
We're back to watching these
I had to post a picture of Annie. She came here to help us out and spoiled my kids! Reesa asked me every morning where her "friend" was. Annie packed fun activities for the kids to do and kept them entertained ALL day! She was so cute, she brought water color books, new balls, play dough, stickers, bubbles, etc. She even understood when my kids acted up, cried non-stop, AND even when Jansen bit her! (sorry Annie!) Annie cooked for us, and cleaned non-stop. She even cleaned my shower (yuck!) and oven for me. I feel so spoiled to have a friend like that!

Here's little "Jansey pants" enjoying and icee.

Friday, June 19, 2009

Day 17 Friday

Good news: Mitchell had a good night on the CPAP, and they were able to turn his pressure down from 7 to 6 and his oxygen is now at 26%. He looks much happier and is doing better.

Hard news: Mitchell has contractures, which are shortening of the muscle fibers. He cannot straighten his arms or legs. It's like having a tight hamstring. This is something that can be corrected, he just needs physical therapy. His right arm is 50 degrees short of straightening, and his left arm is 40 degrees. They think it might be from low amniotic fluid (he couldn't move around as much inside me) or from staying in the same position after birth, OR from the cord being around his neck during birth. So today they did an ultrasound of his brain to see if they could find any bleeding or damage. The doctor still has to get back with me about the results, but the tech said it looked fine. This is something they will monitor until he's one or two. They also are doing another echo today to check the healing in his heart(???). They are planning to work on head control and tummy time.

They also told me he is a grumpy baby because he is in constant training for a marathon! He's always asked to do more work anytime he's comfortable and has had tubes down his throat irritating him. Anytime he's touched it's to adjust a tube, wake him up, or poke and prick him. NO WONDER!

So I got to do a infant massage on Mitchell's arms today. IT WAS AWESOME!!! He loved it. It was so cute, because he was crying and so fussy after his PT and the massage just seemed to calm him down. In fact when I finished he fell right asleep. I can try (if he's having a good day) to massage his arms everyday!!! I'll work with the physical threapist T,W,F at 11:30.

Annie is here helping us out. She is such a good sport to try and do everything we need! She has been cleaning and cooking non-stop! I feel so spoiled to have such great friends, family, and ward memebers that give us never ending support!!! Thank you.

Mitchell is such a sweet baby. I love getting to see him, Hannah described it as "falling in love all over again," and I couldn't agree more!

Thursday, June 18, 2009

This morning we came to the hospital to see this...

Our nurse Bonnie had put a onesie on Mitchell. This is his first time being dressed! We didn't have our camera so Bonnie took a picture for us. What a cutie.

Mitchell didn't make any improvements. His blood gases remained too low to change any of his settings, so they're just letting him rest and adjust. They told me today we should just take it one day at a time, instead of trying to figure out when he'll be coming home. It's looking like it will be quite a while, so instead of seeing that he's not coming home, we should see what he did better each day. So hard to do, but a good idea that I think we'll try.

Wednesday, June 17, 2009

3 steps forward and one step back

Mitchell didn't have a great night. He was struggling to breathe with the nasal cannula all day long yesterday. They moved him back to CPAP finally at midnight last night. (helps him breathe through prongs that go down his nose) This is was he was on the first 12 hours of life and had to be intubated soon thereafter.

Good things: He's eating 46 cc's every 3 hours so he doesn't need an IV!
He doesn't have a tube down his throat causing inflammation, mucus, and as much support.

Things we hear daily from the doctors and nurses (that we now laugh about)
1. Patience, Patience, Patience.
2. Don't watch the monitor. (you'll drive yourself crazy)
3. We are good babysitters. (we give him what he needs and take what he doesn't)
4. You can never trust a baby. (just as soon as you're making progress he'll change his mind)
5. It's time to take away the ducky. (we have to push him all the time)
6. Every baby's different. We don't know how long he'll be here.
7. Don't get caught up on the numbers. (there are too many variables in the equation)
8. It took me 13 years to learn all this, you can't learn it in 13 minutes.
9. Mitchell's the boss. He tells us what he needs.
10. We push him, he pushes back. (he has a breaking point)

Tuesday, June 16, 2009

No ventilator

They took away Mitchell's ventilator today and 7:40 a.m. and put him straight to a nasal cannula!!! He hated that tube down his throat and was very aware of it. He tried to pull it out so many times. He'll be much happier this way, you can even see his face! BUT he is working so hard to breath. You can see the contractions in his chest and his breathing is very labored. Please say a prayer for this little boy, I would HATE to see them have to re-intubate him. He's very close to going either way...
so little
Nurse Jackie sat him up to try and calm him down. She had tried everything else to get him to stop crying, and of course we thought he was so cute!

Monday, June 15, 2009

Day 13 Monday

I took some great photos today, but it's too much to post them now... so stay tuned. Anyway, we have a new Dr. doing rounds this week, and he is doing a POWER wean! He really wants Mitchell off his ventilator by tomorrow so he is PUSHING him. They have him completely off the Nitric, when I left tonight he was down to 26% Oxygen and the ventilator giving him 23 breaths per minute. I actually don't like to see it. His breathing is so labored and he is just fighting. But I guess that means he'll come home sooner, if he makes it through this.

Still on "no stimulation," so no touching, talking etc. I keep asking about holding and feeding him. Maybe tomorrow night I can hold him and feed him in about a week! I'm so tired, and living with a constant headache AND Hannah leaves tomorrow. She's been such a big help, and support. Thanks for coming Hannah, we needed you. To you, thanks for your prayers and love. xoxo

Sunday, June 14, 2009

Day 12 Sunday

We went in this morning to see Mitchell, and it doesn't look like the Sildenafil has done anything yet. He didn't have a good night and they had to bump up all this levels. ONE great thing, they are feeding him 30 cc every 3 hours, so he doesn't need an IV anymore!!! We're so happy about that. They have moved him back to low stimulation to help his saturation levels. So the ear muffs are back and no more touching (or holding!) Worried dad studies the monitors
Trying to go to sleep

They bumped up the oxygen to 54, but had it down to 39 by the time we left... that's a good sign
Hungry Mitchell?
(They cut the binki's to fit around his feeding tube, we had to laugh)

Day 11 Saturday

Okay, deep breath. Mitchell is not doing bad, but he's not doing good. I guess that's what happens when you think you're out of the woods! So yesterday when I went in, his gases had not been good and they could no longer take away oxygen or nitric. They tried for over an hour to give him an IV and finally got one in his foot. (which only lasted a few hours) They called the cardiologist and asked him to come down and do an echo. Luckily I got to be there for everything. They found that he still has PPHN (where the systemic pressure = lung pressure) and the ductus arteriosis is still present as well. They decided to try a new route and are giving him Sildenafil (aka Viagra!!!) They are hoping this will help dilate the lungs letting the blood flow there and become oxygenated. Then they can take him off the Nitric oxide AND the ventilator as well.

They also had moved back his feedings from 25 to 20 cc because he keeps vomiting. That's why we're so excited to get him off the ventilator. He hates that tube down his throat, and because he's an older baby without being sedated it really bothers him, and make him gag all the time.

Last night Jake stayed home to let me introduce Hannah to Mitchell. He's so cute, I hope Hannah doesn't get too baby hungry... ha ha

Reesa and Jansen have been in heaven having thie cousin Emma around to play with. She is the happiest baby and so easy to get to smile!

Friday, June 12, 2009

Day 10 Friday

We had lots of good news today! They turned off Mitchell's heating bed and are now letting him try to regulate his own body temperature. They moved his feedings to 25 cc every 3 hours, growing boy needs more food!

I didn't get to hold him today. They tried 4 new IV's in his head and didn't want to risk this one going out. BUT they gave him his own little stereo playing classical music. His muscles are very rigid, (he can't straighten his arm without pushing on his elbow) So they will wait until next week to start physical therapy, and I will learn exercises for him to do as well as some infant massage. How exciting!!!
His gases came back great and they now have his Oxygen at 27 and Nitric at 3. I'm posting the monitors so I don't have to write every detail.
He has come such a long way. I asked the Dr. if Mitchell was even sick anymore, he laughed and said "my how your standards have changed. Most parents would freak out to see a baby on a ventalator, let alone call him healthy." He told me now we're just polishing the edges, and the last hardship he needs to over come is eating...