Visit from Santa

Feeding Tube Going Well

Gabe has been doing well with the feeding tube, and is gaining around an ounce a day! Whatever he doesn't take by mouth we put down the tube, and then he has a pump going all night.

I have finally figured out his eat/sleep schedule and am enjoying my time during the day with him. He is so much fun and usually a very happy boy.

We have an appt. with a feeding team next Wed. to determine why he isn't eating well. I talked with one of the team members on the phone, and she thought from what I was telling her, it is reflux. She said that they learn to avoid the pain, by not eating much. It was an interesting conversation.

Gabe loves watching Roxy (0ur dog) play and he will sit/stand and just smile and laugh at her. Roxy has turned out to be a great baby entertainer. Gabe is so beautiful and I just feel so blessed this holiday season.

Feeding Tube

Last night we had the Home Health Nurse attempt to put in a feeding tube. She was unsuccessful :( and had us go to Children’s Mercy ER (downtown KCMO) to get it put in right. It was a long night, but we got the tube put in and are now able to get Gabe a full feed even if he won’t suck it down himself. Hopefully it will only be short term and get Gabe over the hump of not gaining weight and eating better.

Below are some pictures prior to the feeding tube going in.

Update

Yesterday we had a doctor's visit because Gabe hasn't been eating very well during the last couple of weeks. Gabe doesn't take his bottle from about 4 AM thru Noon. We have tried everything possible but his strong will and gag reflex prevail. The doctor's exam didn't shed any light on why he has the lack of appetite. He also had some blood tests done at Children's Mercy which also didn't show anything unusual.

Gabe has to gain weight and this recent weight loss could send him back to the Hospital. He doesn't seem unhappy or upset that he hasn't eaten anything for half the day. It is really frustrating for us parents knowing that he is regressing and there isn't anyway that we can stop it. We have another visit with Home Health Nurse this Thursday and may have the option to use a feeding tube. This is a step backward but could keep him out of the hospital. We should be getting some consultation from a feeding expert soon.

Please pray that regains his appetite and takes full feeds.

At Home.... Finally!

Spending time with the pup. We think they will be buds!

Tummy Time :)

Bath time for both of us

All Clean!

Coming Home

Going mobile for the first time. Trying out the NICU stroller a week ago.

Sitting in the car seat waiting to burn some rubber!

Not much of a view from down here.


Almost Home!

Coming Home!

Gabe is supposed to come home on Saturday!!! I was afraid to post this because I didn't want to jinx it. He will be coming home on oxygen and lots of medicine. We decided on a pediatrician which we feel VERY comfortable with. She has lots of experience with little guys with lots of needs.
We ask that you try not to visit Gabe for the first couple of weeks. Also, if anyone has been sick in your household in the past week, PLEASE do not try to visit. We need to be very protective of him not to get sick so he doesn't end up back in the hospital.

Great News!

There was some talk that Gabe could possibly be released this next week! We can see the light at the end of the tunnel!
He has come down to 1 liter on his oxygen flow, and is taking most of his feedings by mouth. He needs to be doing this for a few days before he can be discharged. They decided to wait on the hernia surgery until after he is older and healthier. That is fine with us, because we just want him home!
Dan and I are both sick right now, so please pray that we are healthy by the time he is ready to come home.

Passing the Time with Dad

Spending quality time with my dad.

What a wonderful daddy I have, giving me exactly what I want!

So full...

Mom Home Sick

I hate being away from the little guy, but I would hate it even more if I gave him anything to make things worse. I always freak out the day I realize I'm sick, since I would have just seen him the day before giving him kisses without knowing that I could be giving him something.
The past couple of days, his oxygen needs have been up about 10%. The doctors aren't worried yet, since it could be a temporary thing that nothing is causing it to be up. Although, it could be a sign of something else. He has been making such great progress lately, that I pray Gabe continues on the road to home at a good pace with no more set backs.
I would post a picture, but Dad has the camera to make sure I don't miss anything while I'm away.

4 Months and Counting!

Gabe celebrated his 4 month birthday on the 21st. He is currently 9 lbs, fiesty, adorable, and loves to be held. He rolled over for the first time this past weekend (Mom and Dad missed it...boo!). He is taking most of his feeds by mouth and has come down from 4 liters of oxygen flow to 3 liters (needs to be at .5 before discharge). He did have his eye surgery, and things look very good. We are currently very busy with work and loving up the little guy in our free time. Sorry for not updating in a long time. As you can see, not a whole lot has changed.

Making Progress

This week Gabe has made a lot of progress!

1. He is off the CPAP and on the high flow full time (pray that he stays on the high flow, his CO2 is already creeping up).

2. He is taking more from the bottle and loving every sip.

3. The feeding tube is now going through his nose and into his stomach (when Mommy starts feeling better, they'll try feeding the more "natural" way).

4. Now Gabe has a team of nurses that will take care of him instead of new nurses everyday. This should help him since they know his quirks.

He had another eye exam on Thursday and the doctor determined that they need to do surgery. Not sure yet the date (probably within a week) or the type of surgery (either laser or an injection into the eyeball). This is a necessary measure to take to prevent our little man from being blind. We were reading that over 90% of preemies don't have a problem with the development of their eyes, but of course Gabe would....sigh.

I, Mom, have been sick and have not been able to see him since Wed. It is driving me a little crazy, but forced me to relax and take care of myself. I look at everything our little family has gone through with Gabe and see God working in it all. I am ashamed to say that I haven't always trusted God to take care of Gabe through this process, but was extremely humbled when I realized that God trusted US to take care of him. If He is willing to trust us to love this precious little baby, how foolish was I to not trust Him to take care of him! Thank you God for entrusting Gabe's care to measly Dan and I. We will not take your blessing for granted!

Taste Therapy

Below are the stages of taste therapy as enjoyed by Gabe.


Step 1- Suck some milk off of a sponge. Yummy! Gabe was eating/sponging maybe 5-10cc's from his 45cc meal during the past month.

Step 2- Take it like a man from the bottle! Right now Gabe is sucking down 15cc twice a day out of a 60cc meal.

We think mom enjoys the taste therapy just as much as Gabe does!

In the Swing Of Things

Gabe is big enough to enjoy spending time in a swing. A special thanks to cousin Jacob for growing out of his swing and letting me borrow it!

3 Months Old

Gabe turned 3 months old on 8/21/09. Look how big he is getting! 6 pounds 11 Oz.

Here he is at 2 months.

One Month.

Gabe's CO2 is down today. His last number must have been a fluke. He is breathing faster today, which could wear himself out if he doesn't slow down.

Well today his CO2 number is back up again. Its hard to post positive things b/c it always seems to turn negative again.

Gabe has been making some progress during the last 3 days on his CO2 blood level. The levels have slowly been dropping. Mom, dad and the doctor are thrilled.

In Need of a Miracle

It seems like the news never gets better...
Yesterday the doctor heard a heart murmur so she ordered a cardio echo to see if the pulmonary hypertension had gotten any better from the nitric oxide. The cardiologist said it is still severe and there is a lot of extra pressure on the right side of the heart. If not treated it can cause heart failure on the right side. Therefore they are upping his dosage of the medicine for this. It is a waiting game to see if it helps, and the doctors don't want to up it too much because it is still kind of an experimental drug and they don't know all of the side effects, short and long term.
We had a long talk with the doctor today about the plan. Right now we are waiting for a couple of weeks before getting another echo to see if the medicine worked for the pulmonary hypertension. If it didn't, then we may try steroids again, or possibly a tracheotomy (put back on the ventilator, but the tube will be surgically put into his trachea on throat area, can be on this anywhere from 6 months to 2 years).
As you can see things aren't good at this point. What Dan and I really need right now is lots and lots of prayer that the medicine he is on works, and he gets better or shows improvment very soon. We both are trying to keep the faith and not lose hope, but we are pretty broken down at this point. God says he won't give us more than we can handle, and I'm thinking, "how much more can we really handle!?" We just need a miracle for Gabe.

Gabe's PH :(

Gabe's Pulmonary Hypertension (PH) is really slowing down the progress for going home. The doctor's are starting Gabe on a second type of medication to help relax his blood pressure in his lungs.

We learned today that PH is the most severe side effect of Chronic Lung Disease. Please pray that Gabe responds to the medication and grows out of both the PH and Lung Disease. We disparately want to see Gabe make progress and are praying for a Miracle.

Gabe also gets upset with the CPAP head gear. Everytime he moves around the mask or nose prongs push on his nose. It must be uncomfortable! The doctor's are telling us that they need to focuse on the PH before working him off of the CPAP.

Long Time

All clean and bright-eyed for the camera!

Getting all clean in his first bath with Mom and Dad!

Gabe in his new fancy crib!

Sorry it has been so long since the last update.

We were trying to get him weaned from the CPAP. He was 6 hrs on CPAP, 6 hrs. on high-flow cannula for a couple of weeks. Then last week it seemed like he was ready to alternate 8 hrs. on high-flow, and only 4 hours on CPAP. Well, it didn't last long before his CO2 levels skyrocketed and he had to go on CPAP full time. Unfortunately. It has been a hard road since then. He hasn't been able to come off the CPAP since. When they try high-flow for even a short time, his CO2 goes into the 90s.

Our amazing doctor this week was considering steriods, but she wanted to get a cardio echo to make sure nothing was wrong with his heart. The cardiologist found that he has pulmonary hypertension which is when the heart is stressed and it constricts the heart. He has this because of his chronic lung disease, but this prevents his lungs from getting better. They work against each other. Therefore, they put him on nitric oxide (not laughing gas) that is supposed to relax and open up his heart.

Then they thought he had an infection yesterday because he was really pale and higher CO2s. This turned out to not be the case.

NOW! they are starting him on a high doseage of hydrocortizone for almost 2 weeks to try to get these lungs better. The doctor wanted to stay away from the steriod they used to get off of the ventilator because it has some neurological side effects, especially in the brain. So we are not expecting results right away like we saw before.

PLEASE PRAY FOR THESE TO WORK WITH NO SIDE EFFECTS!!!

2 Months Old

My stuffed puppy doesn't look that big anymore!!

7/21/09

6/21/09

Growing!

Gabe is now over 4 lbs!!!
He has been switching back and forth between the nasal cannula and CPAP every 6 hours for quite some time now. He seems to be doing well with that.
He also is taking part in a study through KU that provides positive stimulation orally with a gently vibrating pacifier. He has LOVED this! He goes to town whenever he gets this special pacifier, and is usually very alert through the training sessions. The objective of the study is to improve preemie's' suck, swallow, breathe instincts.
He is wearing clothes in his isolate. They tried putting him in a crib, but he just couldn't keep his body temperature up.
Please keep praying for his lungs and breathing. This has been a tough obstacle for the little guy.

Still here, just waiting

It is just a waiting game right now. The only change is Gabe is on the nasal canula for 6 hours a day, and the rest of the 18 hours he is on the CPAP. Still trying to ween him from this CPAP and it's just taking a very long time!

Time with Mom

Mom's arm got tired because Gabe weighs 3 lbs!!

Gabe's eye checkup this morning was normal today. Next exam scheduled for 3 weeks out.

Just Pictures

Wide Awake

My old private room. We miss you.

So tired from all that growing.

My stuffed Dog...

Reminds me of a Tanooki Suit.

Just relaxing..

Calm Season

Things have been very calm for Gabe in the NICU lately. Right now the focus is for him to continue gaining weight and wait and see what happens with his lungs. They haven't been improving at the rate that the doctors would like, but they have tried a couple of non-invasive options and waiting to see what happens.
Last time he got an x-ray, they could see that his lungs were collapsing a bit, so they upped his air pressure. His oxygen level has been pretty much the same ever since he was put on the CPAP. They would like to be able to bring the pressure and oxygen level down to ween him from the CPAP.
Funny story from Dan... when he was holding him on Saturday, they hung his feeding tube and syringe up after Gabe was done eating to get the last little bit to go down. Well, like any other baby, Gabe burps after he eats, but instead of it going through his mouth, it goes through the feeding tube and into the syringe. It makes a really funny noise when it happens, Dan described it like when you're sucking through a straw and you are sucking the last little bit out of the bottom. It cracked us up every time we heard it:)

Yesterday

The doctor told us yesterday that Gabe had some bleeding in his head, but that it was really mild and that she was happy with the results. There was no bleeding in the ventricles or any pressure on his brain tissue. Please pray that God stops the bleeding and that Gabe doesn't have any developemental problems due to it. He also has had some weight gain in the past two days :) He is now at 2 lbs 9.5 oz.

Dan's First Father's Day

We both are so glad that Gabe has been doing so good this week! He is still on the CPAP, but he is stable and hasn't needed to go back to the ventilator! The little guy weighs 2 lbs. 7 oz. and is working on beefing up right now. Dan got to hold him last night. Gabe's mouth kept opening wide while he slept on Dan's chest, which causes the oxygen he's getting to escape through his mouth instead of going to his lungs. Dan kept trying to push his mouth shut, but gave up after an hour when they put him back.

Dan is already such a caring and loving dad. Gabe is really lucky to have such an amazing example to follow as he grows up.

Growing Up So Fast!

After Monday, we weren't expecting this so soon! Gabe has been taken off of his ventilator!!!
We can't believe it. It is truly God's hand upon his little lungs. The nurse was going over his settings over the past two days, and it was unbelievable how fast they were able to ween him from his support. Now he is on what is called the CPAP. It fits over his little nose and gives him continuous air so his lungs don't collapse since he is breathing in and out on his own now. In the pictures you can see his feeding tube going into his mouth, which goes down the esophagus. His full feedings go down that little tube, so he was taken off of lipids (like a pumped up Gatorade). He is only getting fluids and his medicine through his IV now.
He has had several poopy diapers, one and a half I changed. I figure I'll have enough of those down the road, why get burnt out now;)
The best part of the ventilator being out, is I finally get to hear his little baby noises! He has a VERY tiny, hoarse cry, but it just makes me beam to finally hear him!

This picture was right after a major tantrum because he doesn't like getting breathing treatments with the oxygen mask (top left corner of picture). He was a little worn out from all of that fussing.

Feeling Better

Gabe is doing much better today!

I'd even say he had a significant improvement. :) His lungs are working so much better than yesterday that his vent settings on oxygen and pressure are down so much that both Shannon and I thought there must have been a mistake on the machine. It's nothing short of a miracle from God!

Lung medication

Gabe had his surgery a week ago and had been making some progress. However, he has started to backslide on his vent settings since yesterday. Oxygen content is up along with the pressure settings. The doctor's are recommending to us that they use a steroid, dexamethasone, to help with his lung development and to get him off the ventilator.

In the 1990's this drug was administered at much greater doses and for longer periods of time. Some of the long term side effects of higher dosage were:

• Cerebral palsy
• Impaired growth
• Neurodevelopmental delay
• Lower IQ scores

The long term side effects are less likely with the lower doses. Please pray that God heals Gabe's lungs and protects him from any short term or long term side effects.

Diaper days

Gabe had some good news to share. He filled up his diaper, #2, for the first time. He was rewarded by getting extra milk and more often. This is great news, since it is the first steps of him being ready to eat is own lunch instead of having other nutrients pumped directly into his blood supply.

Other funny news.... Mom changed his diaper yesterday. However, when the nurse was turning him over his diaper fell off. Oopsie! Gabe had to be turned again to his back so he could get the diaper reattached. :)

Recovery Day One

We learned today that Gabe still has a heart murmur. However the murmur is not associated with his now closed PDA. (Praise God!) It is called a “PPS" murmur or peripheral pulmonary stenosis. From what we understand it isn't anything to worry about.

This is what I found out about it online: "In newborn babies the arteries that lead to the lungs (branch pulmonary arteries) are typically somewhat small. When the blood gets pumped from the large artery leaving the heart and enters these smaller pulmonary arteries, there is very often some turbulence and the blood makes a whooshing noise similar that that of water going through a bend in a garden hose. " He should grow out of this murmur.

Other news: Gabe's chest tube was removed today. It was sooner than we anticipated, and should allow him to be more comfortable while he recovers. He also has been started on some thyroid medicine to compensate for his low levels. The levels are checked every morning for progress.

Successful Surgery!

Gabe's surgery is over and everything went well. He is sleeping soundly and looking cute as ever!
The doctor who did the surgery said that a significant improvement in blood flow would be at a 4, and Gabe's change in flow was 22! He REALLY needed that PDA closed! We are so excited to have this obstacle over with and can't wait to see his improvement over the next few weeks!
Thank you for your prayers! Please keep praying for his recovery to be quick and as pain-free as possible. And his lungs recover from all the stress and he is able to be weened off the ventilator at a good pace.

Surgery

On Monday 6/8/09 at 12 Noon Gabe will be in surgery to have his Patent Ductus Arteriosus closed. We understand that the surgery will only take about 30 minutes total, but there is extensive set up time associated with it. Please pray for a speedy recovery and that his RDS also clears up as a result from the surgery.

Cat Needs a Home

Since we have family with cat allergies and bringing home a little baby soon, we thought it was time to get rid of our cat, Bandit, before we move next weekend.

If any of you know of anyone wanting a cat, he is very people friendly, 8 years old, litter trained, is fixed, declawed in the front, and is playful with strings.

I don't want to take him to a humane shelter, so please let us know if anyone wants him. You can just post a comment and we'll get in touch with you if that is easiest.

Waiting...

They are still letting Gabe recover from his bad weekend before they decide on what to do about his PDA. The nurse said, unofficially, that Gabe will have another echo of his heart on Monday, and the doctor will probably decide then if they'll do surgery or more medicine.

We both have gotten to hold him since. He is so precious, and it's hard to put him back! Dan also got to change his first diaper... it was pretty funny. It was probably the longest diaper change in history because he was being so careful and gentle.

Good Surprises

We were surprised to find out today that Gabe was doing well enough for Mom to hold him. This was her first chance to pick him up and she didn't let go for 2 hours!!! Gabe was very relaxed in Mom's arms. He didn't even fuss when Shannon had to stand up so we could switch out her recliner for one that worked.

If he does well through the night I will get to hold him tomorrow.

bad days and good days

The bad - (Sunday)

Gabe gave us a pretty good scare Sunday night. He had major swelling due to the medication that he was on for his PDA and he had low blood pressure. His platlet counts was down and he had his 4th blood transfusion. The doctor also could not pinpoint what was causing his worsening condition. Lab cultures needed additional time for results. Words could not express how we were feeling.

The good -(Monday)

PDA medication was halted and his swelling had reversed, blood pressure was back up and cultures came back negative for infections. What a relief!

An xray was taken to verify the location of his new breathing tube and another echo on his heart to view his PDA. The PDA had not closed but did reduce in size.

We should find out Tuesday or Wednesday if they will try another round of medication or decide on surgery to close his PDA.

Oscillator

This was the second ventilator that Gabe used. It however did not have the desired results, and was only used overnight.

Lungs

Gabe's lungs are causing all kinds of problems. His CO2 level was up again, and on an xray they could see signs of stress on the lungs. They're not sure if it is an infection of the lungs or the PDA medicine is causing problems. The doctor decided to put Gabe on a different ventilation machine called an oscillator. This gives him short fast breaths (Dan says it sounds like a train) to keep his lungs open. There can be side effects for using this so they said they may have to switch him back and forth between the two types of ventilators. He told us that Gabe isn't unstable, but he's not stable like he was. They are keeping a very close eye on him. So close, that one of the nurses was camped outside of his door all night monitoring him. It's good to know she's there, but bad to know that she needs to be there.

Pray that his lungs heal and mature into healthy lungs, and the PDA will close VERY soon. It seems like the PDA keeps causing problems.

By the way... the blue light is back on. Gabe was concerned he was still too pale for summer;)

Everyday Brings Something New

On Friday, when we got there, they still hadn't started his 3rd blood transfusion yet. Since the UA in his belly button was taken out, they have to start an IV for these and poke him to draw blood now (poor baby). They kept poking him different places and were unsuccessful, so lastly they put the needle in the TOP OF HIS HEAD! Talk about tearing a mom's heart out! They said that unfortunately the best veins on preemies are in their heads. So now he has a little IV poking out (don't know how long that will be there).

His PDA (tube that bypasses lungs) did not close with the first round of medicine, so they decided to try it again with the same medicine (ibprofen), but double the doses and extent it over 5 days instead of just 3. Pray that this works, because if not, he'll have to have surgery to close it.

Now for the good news!

1. His white blood cell count keeps going up! I got to change his diaper and take his temperature again, but didn't have to where gloves this time.

2. He has gained 4 oz. since he was born! He is now 1 lb. 15 oz.

3. Lastly, only parents will understand... when I was talking to him, he was working so hard to open his tiny eyes (he opened them 3 times). I think he recognized my voice.

I was supposed to hold him, but the nurses thought that since he is so sensitive to touch which make his levels drop, that we should hold off on this. Obviously, I want what is best for him and will wait patiently. I also want it to be a positive experience for both of us.

Bye bye blue light

Yesterday they shut off the blue light. Gabe was so excited and Mom even saw him raise his eyebrows several times :)

Progress!

I just got an update from the nurse over the phone on his progress.
1. They got the picc line in last night and everything went smoothly with that.
2. His white blood count doubled!!! He is still on reverse contamination though since it is still low.
3. They have to gradually take out the tubes that were in his umbilical cord and keep him on his back for 4 hours to make sure everything closes today. The nurse said that he has not liked being on his back today, so they're going to have to sedate him a little and give him more support through today.

Overall, he is doing good though for everything that happened this last day. Praise God!

We are learning that everyday there is something new that they inform us about. Today was the picc line. So far he has had tubes in his umbilical cord so they don't have to break skin, but we were informed they only keep these for 7-10 days. So the picc line is when they put an iv through his arm or leg and thread it all the way to the heart. This will provide a way to get nutrition in him and take blood samples from him so he's not being poked all the time.
There are some risks involved and getting it in may be difficult. Please pray for it to go in easily the first time, and that they don't have to replace it during treatment. They are going to try to insert the line probably Thursday sometime.

time with dad

It hasn't been easy. All the equipment, all the alarms, all the sensors and wires are unnerving. Gabe's white cell count has been low ever since day two and his room has a sign that reads "Reverse Contamination". Gloves and gowns are required for everyone that reaches into his incubator. He gets upset with the nurses when they mess with him. His % O2 reading alarm sounds and readings usually drop some.

I think I got about a minute of time holding his hand before his readings started to drop.

Did you say needles?????

Just Relaxing with Gabe

Shannon was able to start relaxing today with Gabe. Well until the nursing staff started talking needles...

They are going to take the line out of his umbilical cord and place it into his arm or leg. Normal proceedure from what we understand.

Gabe had his breathing tube changed out last night and his air leakage is almost gone altogether. Yeah!!