The Best Christmas Ever!

It truly was the best Christmas that Andy and I have had since we’ve been married. For the past two years we’ve hoped and dreamed and prayed for a baby. When we first found out that I was pregnant we called Andy’s Mom and broke the news to her by saying, “Is it okay if we bring a baby to your house for Christmas this year?” Of course she said “YES!” It was so exciting to spend this holiday with our little man.

Christmas Eve we opened all of our gifts at home. Daniel sat there with, just a happy little guy. On Christmas morning we got to Grandpa and Grandma Kilgore’s at 7:00 am! Daniel slept through all of the gifts. We drove to Holly that afternoon and Daniel happily sat in Grandpa Emmitt’s lap through the whole gift opening. He was such a good baby!

An update on the hypothyroidism tests – his thyroid hormone level is “normal,” though the th3, which regulates the hormone level is high. So, he will be continually monitored over the next few months.

We have recently had a tough time keeping him from becoming congested. He is extremely sensitive to dry air. We have to have humidifiers going in whatever rooms he is in, otherwise his nose gets stuffed up and he has a lot of trouble breathing. One of the causes is the oxygen in his nose. We continue to pray that it is doing its job and helping his heart regulate his blood pressure. Hopefully only two more months with the tube up the nose.

Daniel seems to be getting so big! We haven’t been to the doctor in over a week and a half (which is a long time for us!), so we don’t know what he currently weighs, but he seems to be getting a lot bigger. He has outgrown his newborn clothes and he is wearing 0 – 3 month clothes! He is actually really long – almost too long for the 3 month clothes.

Nursing has gotten better. He is still hungry every 3 hours or so, but some nights he sleeps 4 hours at a time. We are going to start trying to get him to go to bed before us (he is sleeping in a pack ‘n play next to our bed). Our first real attempt was tonight and it took an hour for him to fall asleep. We are giving him a pacifier, but he hasn’t been able to keep it in his mouth by himself yet.

I go back to work next Wednesday, and I am really going to miss him. Please pray for this transition.

I recently received an email from a woman named Paula. Paula is pregnant with twins in March and one of her babies has been diagnosed with hypoplastic left heart. She has asked for our prayers. Please add her to your prayer list!

We hope you all had a wonderful Christmas. We praise God for sending us His Son to save us from our sins and thank Him for blessing us with our son.

Going bald?

Say it isn’t so! Daniel is losing his beautiful dark hair – right on top! Just on Saturday we looked down and saw that he was getting really thin on top – yikes! We are praying it is just normal infant hair loss, as it is also a symptom of hypothyroidism (we haven’t gotten the results of the last blood test yet. )

This afternoon a nurse came and gave Daniel his first RSV shot. Thursday we have to go the pediatrician for another weight check and to have some more blood drawn.

Monday was another big day – a trip to the cardiologist. Daniel was 9 lbs 4 oz! We knew that he was getting “taller” because he has actually outgrown a couple outfits. The weight gain was very reassuring to me, since a week ago I made the decision to change his diet. I have been exclusively nursing and only pumping once a day, if that. I wasn’t getting enough to feed him with the pump, but nursing has been successful so far.

Daniel’s cardiologist told us that his heart looks great! The part of the aorta that was repaired is wide open and the patches look good as well. He is going to drop one of his medicines, but will stay on the lasix for now. Daniel still has blood pressure issues with his lungs and the doctor felt that he needs to stay on the oxygen for another two months. Our next appointment is February 12, so I hope that for my birthday he is doing good enough to be taken off the oxygen!

On a developmental note – Daniel can hold his head up for a long time by himself. He also likes to “stand” and bounce on our laps. As I type this he is sitting in my lap : ) He seems to be growing up so quickly!

We wish everyone a very Merry Christmas and will be sure to post pictures of our celebration!

God Bless you all!

Six Weeks Old

Six weeks old today – time is flying by. I get up in the morning and the next thing I know it is time to go to bed! I’ve been trying for a week to get my Christmas cards done – I guess I have two weeks left!

We have had a busy schedule. Daniel usually has at least one doctor’s appointment a week. Last week Thursday he was 8 lbs 5 oz – still a little guy, but growing.

We received notice from the state that Daniel has tested positive for congenital hypothyroidism – twice. He was tested both times during our stay at U of M. His local pediatrician reordered the test and we are still waiting on the results. Congenital hypothyroidism if untreated can cause mental retardation. If he is found to have this syndrome he will most likely have to take medication for the rest of his life – but it will have been caught early enough that he shouldn’t be affected by it. There is a possibility that he tested positive for this at U of M due to his blood transfusions during surgery. Please pray that he does not test positive for it this time.

Daniel also spent his first weekend at Nama & Papa Emmitt’s house. The mini van was packed to the gills, but we made it and had a great time!

He attended his first church service last weekend – the children’s Christmas program. It was nice being able to show him off to so many of the people that have been praying for him for all these months.

Last night he went out to dinner for the first time – to Kobe Steakhouse for Granny & Jed (they picked these names!) Kilgore’s 31st anniversary.

This afternoon I threw the travel oxygen tank over my shoulder and took Little Bear for a walk down the sidewalk. It was such a beautiful day.

One of the big differences we are noticing in Daniel is that he needs to be stimulated more and more. Last month all he needed was to be held and feed. Now he is not content with just laying in our arms. He wants to stretch out and look at things.

I have such a tough time getting anything done because I don’t like to put him down. I really have to work at getting out of the house at least once a day, otherwise I get cabin fever. I will be going back to work after the holidays, but I am blessed with the ability to work from home a couple days a week. Andy and my Mom will be watching Daniel on the days that I am not home.
Daniel has his next cardiologist appointment on the 17th. We are praying that he is able to go off his medications – two diuretics that he has to have once a day – and we pray he is able to be taken off the oxygen (he will be ready to get that thing out of his nose too - he is constantly pulling at it!). We will make sure to update you all next week with the results from the appointment!

One month old and gaining weight!

That’s right, Daniel is now 7 lbs 11 oz – he is finally gaining weight! Last week he started this growth spurt – demanding more and more food at each feeding. He even wakes up on his own at night to eat. We don’t need an alarm clock any more, he wakes up during his scheduled eating times. The only issue with this growth spurt is me producing enough to keep him happy. I’m nursing for two/three of the scheduled feedings a day, but that means I actually nurse him 6 – 9 times to keep him full during those periods.

He finally had his little boy surgery Monday – right in the pediatrician’s office. It was nearly as traumatic for me as his heart surgery. I felt so bad for him! It looks so painful, but Andy tells me that he won’t remember the pain. I just have to handle the diaper changes and seeing that ouchie right now! It is actually healing really well – I’m sure he’ll appreciate this post when he is a teenager : )

We had a busy, but fun holiday weekend. The whole Emmitt family came over last Friday and brought us a Christmas tree! Shelby brought all of her camera equipment and set up a studio in the basement. She took professional pictures of each family. Daniel slept the entire day, even though his cousins were having a lot of LOUD fun all around him.

Laura and Dolley are now home. They are doing pretty well with Daniel. Laura is very protective of him, though she seems pretty sad to be home (I think she had a lot of fun at Doggie Camp). Dolley doesn’t leave my side – just like before. The only annoyance is their barking (anyone looking for a Christmas gift for us could invest in a pair of shock collars! Just kidding… kinda).

Being home for Thanksgiving again reminded us that we were so blessed at how fast Daniel recovered. This holiday season please remember the kids and families that are still recovering at the hospital – the families that won’t be able to be home for the holidays. Please say an extra special prayer for them.

Happy Thanksgiving

We have so much to be thankful for!

We spent the afternoon at my parent’s house, Daniel spent the afternoon sleeping. He was fussy this morning and we found out why 5 minutes before we left the house – he had an upset tummy. He is doing really well though. Andy has increased the amount he bottle feeds and I am nursing two or three times a day. We are even getting “used to” sleeping in two hour shifts.

Here is a picture of four generations – Great Grandma Gaunt, Grandma Kilgore, Me and Daniel

A tradition was continued yesterday – Daniel received his first tub bath from his Grandma, just like I received my first bath from the grandma pictured above. He didn’t like it at first, but loved it after he realized the water was warm. His little cheeks were so red from the tape that holds on his oxygen.

And now for the big news of the week…

I am now a Minivan Mom. Andy convinced me to give up my little red sports car and join the soccer moms. It honestly works a lot better for carting around a car seat and oxygen tanks. And to give Andy credit, it is a nice (used) minivan. I’m sure I’ll be the favorite for our work carpool from now on!

We can’t say it enough – thank you all for your support and prayers! We are so thankful for all God has blessed us with.

Happy Thanksgiving!

One Week Home

We have been home a week now and are starting to settle in to our routine.

Grandma Emmitt spend two nights and two days with us and helped a ton!

We had an appointment with the pediatrician and cardiologist this week. Daniel’s feeding tube is out now, hopefully for good! He is taking his bottle well and the pediatrician has given me the green light to nurse Daniel for half of the feedings.

The cardiologist thought that his heart looked pretty good, but wanted to keep Daniel on oxygen for at least another month. So, we got one tube out of his nose this week. Going to the cardiologist brought me back to reality – the reality that Daniel will always have heart disease. The problems he was born with have been repaired, but there will always be the possibility of further complications. I pray that I won’t be that overprotection Mom, the one always worried about every little move. But, for now, it is tough for me to take my eyes off from him.

He started smiling this week. I know most people say that when babies smile they are just passing gas – but on Daniel it looks like he is really thinking some happy thought. I think he might have at least one dimple too!

Here are some more pictures for your enjoyment!

If you want to know what time it is...

Three days home and we are sleepy! Daniel is on a feeding schedule. He has to have a bottle every 3 hours – 12:00, 3:00, 6:00, 9:00, 12:00 and so on. He gets “Mommy food,” but I have to add formula to the milk to add calories. Andy has done such a great job with the feedings that we haven’t had to use the feeding tube since we’ve been home!

Last Friday, when Daniel was discharged, we were unable to have his “little boy surgery” done – we probably wouldn’t have gotten home until midnight if we would have waited for it to be done. We did dress him up in the cutest outfit and he of course puked all over himself right as we were getting in the car. We were SO glad to be heading home that it didn’t matter.

We have appointments with a pediatrician on Thursday and his cardiologist on Friday. We’re hoping that the feeding tube will be able to come out. The oxygen is an interesting thing. We have a huge green tank in the middle of the living room and 75 feet of plastic tubing. We have no idea how long he’ll have to be on the oxygen or the feeding schedule.

We are sleepy and the days just seem to fly by. Daniel is amazing though! He is becoming more alert every day. He is currently laying in Andy’s lap and just staring up at him. When we were in the hospital all he did was sleep, so we are seeing changes in him already!

The best thing for us all is being home. I am feeling so much better. We are starting to get into a routine, thanks in part to the feeding schedule. We truly appreciate all of the cards and gifts that greeted us when we got home. I have a ton of emails and will try to respond to them as soon as possible - just know that we appreciate all of the well wishes!

We have been so overwhelmed by the generosity of our family and friends. We don’t know how we are going to thank you all. Please know that we are praying for you as well.

Blessings!

Watch out Byron Center

I know that you all visit here to see the latest pictures and I apologize that there aren't any new ones. We have them, but I don't have a chance this morning to upload them.

However, our news is just as important - we're coming home tonight!

We have a long day ahead of us. Daniel has to have his "little boy surgery" yet today and be monitored for that. I also have to pass the NG tube test - which requires pushing a tubing up his nose and down into his stomach :( He hates it, but it is how he has to be fed right now.

He is also coming home on Oxygen, so those tubes are up his nose as well and we get to carry around an O2 tank with us wherever we go.

I'm nervous, even though everyone tells me that they wouldn't be sending him home 7 days after open heart surgery if he wasn't ready for us to take care of him. Please pray for our transition from the hospital to home, I would truly appreciate it!

Some of you have offered to help and cook meals for us, and if there is one thing I've learned from having this horrible emergency c-section it is that I can't turn down help! If you would like to help us out with a meal, please email my sister Sarah at srburg422@yahoo.com and she will schedule a weeknight that will work. Thank you all in advance!!

Andy is currently racing around our room at the Ronald McDonald House cleaning and packing and I can still barely move, but we're looking very forward to bringing our son home.

God Bless you all and thank you so much for saying prayers for Daniel!

Daniel is One Week Old

As I sit here to type, Daniel is turning exactly one week old. It is incredible to think that it has only been one week…

… and the big news is – the Surgeon told us he will most likely be able to come home THIS WEEKEND!!!!

Yes, that’s right Daniel’s prayer team – THIS WEEKEND!!

I was literally floored. I didn’t know what to do – I’ve cried WAY too much this past week (a lot of happy tears!), but this news was even beyond that.

We spent about 9 hours at the hospital today – things have changed so much. He is in a room that we can be in 24/7 and we aren’t limited to 2 people at one time and we don’t have to leave 4 times a day for the scheduled closed times.

It is quite like home, except he is still attached to monitors, has the pacemaker wires in yet and has a 14 year old GIRL roommate :) I’m still not exactly sure how he got paired up with her.

Tonight the nurses taught us how to prepare a bottle (of “Mommy food”). We learned how to give him his medicine and feed him through the NG tube in his nose in case he has to have it when he comes home (it depends on how well he feeds).

His Emmitt grandparents and Kilgore grandma got to hold him, feed him and take turns changing diapers. I changed one myself and he even got to wear his own clothes!

Tomorrow he will have an ECHO to see how all the fixed parts of his heart are working. Please pray for these results to come back positively.

We also ask you to say a special prayer for all of the other kids that are dealing with medical issues. Daniel has had a great recovery, but not all kids have it that way. There are even a number of children at U of M waiting organ transplants. They need your prayers as well.

Blessings to you all and goodnight!

Daniel's Big Day!

We got to the hospital at 10:30 am on Sunday morning and found out that Daniel had a great night and morning! He had had his chest tube removed (it had been draining the extra blood and fluid from his chest) and had his catheter removed and they removed the dressing that was covering up his incision. But the biggest news of all was that he was successfully removed from the ventilator! Praise God again!

As of today (Monday) he has an oxygen tube in his nostrils, just aiding him as yesterday was such a big day, and an NG tube in his nose. The nurse tried to feed him a bottle this morning, but he didn’t want anything to do with it she said, so hence the feeding tube.

They had talked about moving him to another area today and out of intensive care, but they decided to keep him there one more day. I was totally fine with that! He had such a big day yesterday and he needed some rest today!

Also last night, Momma, Daddy, Uncle Nate (Andy’s brother) and Aunt Lisa all got to hold him!

We went back this morning and Andy and I both got to hold him again – I held him for over an hour! We both talk to him constantly. I like to tell him about how much Jesus loves him and how many people are praying for him. I try to sing to him, but I am having a tough time remembering songs.

When we go up to see him at night time we bring a book and take turns reading to him. He is still a bit groggy from all of the drugs he has been on, but is opening his eyes more. Yesterday he looked right at me for the first time – it was a great feeling!!

I have had a couple of “episodes” these past two days. Mainly due to the fact that when I’m up at the hospital with him I forget to take my pain meds. My blood pressure was checked again last night and it was 172/112, so I am now on blood pressure medication.

I placed myself on bed rest tonight, thinking that I needed to rest a bit more. Andy went up to read Daniel his bed time story and ended up being able to help give him his first bath! While I am seriously jealous, I know that Andy deserves this opportunity too. He is already such a great Dad!

We have had a number of people ask us about coming to visit. We totally understand why you all want to come – who wouldn’t want to see how awesome our little boy is! However, with him being moved to another area, possibly tomorrow, and my needing just a little more rest, we just ask that you give us a couple more days. We should be able to start making visit plans with people on Thursday and over the weekend. Just let us know when you would like to come out and we will try and make it work.

We can’t say it enough – THANK YOU all for your prayers and support. Not a day goes by that we are not amazed by the sheer number of people that tell us that we are in their prayers. We truly appreciate it!

Please continue to pray for Daniel’s recovery and praise God with us as he is healing so well!

Thank you all,

Andy, Beth & Daniel