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

THANK YOU - with our WHOLE HEARTS!

God is so good…

Earlier this week as I laid in the hospital bed, I thought about this blog and how I would update it as soon as we had internet access again. I planned on going day by day, explaining our journey to date.

Well, it is 3:00 pm on Saturday and while I want to take the time to tell you every twist and turn of this amazing week, I really want to go see my beautiful son…

So, if there was one thing I would want you all to know, it would be this – God has a plan for our little man’s life. God is watching over him every second of every day, and He is answering our prayers. Daniel’s heart IS being healed.

Here goes the rest of the story...

Daniel’s surgery was performed by an amazing surgeon, we just didn’t think it would have to happen so quickly. As most of you know, Daniel was delivered via emergency c-section at 11:48 pm on Tuesday. I tried to deliver him, but his heart rate was not handling the contractions. At the end, they couldn’t even find his heart beat. I looked up at the doctors and yelled, “Knock me out! Get him out!” It was the most scary moment of my life to date.

I came out of general anesthesia sometime early Wednesday morning and heard Andy say, “Beth, we have a son.” The first thing I asked was, “Is he alive?” I was so scared that because I couldn’t push him out that he hadn’t made it. But, miracle number 1 = God blessed us with a live baby boy.

I still couldn’t open my eyes, but I overheard someone ask Andy if we had named him and Andy said yes. For two seconds I was furious! I couldn’t believe Andy named him when I was unconscious! Andy said, “His name is Daniel Steven,” and I was instantly relieved and happy with my husband’s choice – it was the name I said I wanted for a boy from day one.

Not a minute later though, my brain started to pound – and I mean pound. It was banging on my forehead, demanding out of my skull. I started to yell, “Make it stop!” The nurse took my blood pressure, it was in the 170’s (which is not good). The nurse and doctor started to discuss what could be done. They gave me something to help with the headache, but I needed blood tests for my blood pressure. Minutes later they started a Magnesium Sulfate drip that invaded my body and ruined the first 24 hours of my life as a new Mom.

For 24 hours I was unable to eat, drink anything – even water, or see my son. The drugs made my skin burn. I had to have constant cold compresses held to my face. I wouldn’t wish that drug on anyone. But, by 11:30 pm on Wednesday, my blood pressure was back down into the 130s and they thought I was now safe from possibly having seizures.

At 1:00 am on Thursday morning, Andy wheeled me down the hall to the NICU to see my beautiful son for the first time. Thursday was the best day of my life to date. I got to sit right next to him and he held my finger in his little hand. I was literally falling over, asleep and the nurse had to help me let go so I could go to bed.

I was back next to his incubator at lunch time and the nurses let me hold him! He had to stay on the bed pad so that they could attach all of his cords and wires to something to keep them all straight. Andy came in the room shortly there after and we were just sitting there, admiring him when the surgeon came in the NICU.

She told us the best, yet most scary news. With two ECHOs, they had ruled out the Hypoplastic Left Heart Syndrome and only had to repair the Coarctation of the Aorta, the VSD and another small hole in his Atrium. BUT, the surgery was scheduled for Friday at noon – less than 24 hours from where we were at that moment. I had JUST gotten to hold him, how was it fair that I would have to turn him over to the surgeons in just 24 hours?!

We spent the afternoon calling friends and family letting them know the news. We also called Pastor Bruce and asked him to come and baptize Daniel before the surgery. Pastor Bruce got in his car and was at the hospital by 9:00 pm that night. We held the baptism in the NICU with Andy’s brother Tim, his wife Molly and their daughter Maya as the witnesses. It was a beautiful moment.

From 10:00 pm to almost midnight that night, Andy and I were able to hold him once again – this time with just a blanket between him and us. Andy was even able to read him a book. Here was yet another miracle – Andy holding his son for the first time.

We went back to see him multiple times Friday morning. I have to tell you though that we had our wonderful families surrounding us all week long. Our parents were there with us from the start of delivery and supported us all the way through the surgery. Our siblings were also with us in some capacity every step of the way. We have been blessed with amazing families.

The doctors came in to get Daniel around 12:45 pm on Friday. I could barely stand. I was in so much pain – physically and emotionally. I had only gotten 36 hours with him. We sat in our hospital room in the dark for an hour by ourselves before we got our first update from the surgery – they had just gotten in to his chest and were starting the procedure.

I could have told anyone that update myself. I knew the moment they opened him – I could feel it in my own heart. My heart ached.

I still couldn’t breath much easier, even after we got the second update that the coarctation had been fixed. I wanted to get that final word – see the surgeon – see my son.

The surgeon came in around 4:30 pm and told us that it had all gone great. His heart, about the size of a golf ball, was repaired and we could see him in an hour. God is so good!

We took all of the family that had congregated around us up to see him in his new area in the PCTU. Andy and I went in first. And even though there were many, many more tubes coming in and out of him, I felt a sense of peace. The things that were hurting him before surgery were fixed. He is on the road to recovery.

THANK YOU all for your OVERWHELMING support – before and since he was born! Thank you for all of the beautiful flowers and words of encouragement. We thank you most of all for your prayers!! Please keep them coming Daniel's way as he recovers!

I will never be able to thank you all for all you have done for us. We pray for you all to be blessed as you have been a blessing to us. Daniel is an amazing example of God’s grace and miracles. We can not wait for all of you to meet him!

I also have to tell you all that the people here at U of M – the nurses especially – are the most amazing people you will ever meet. They took such great care of me and are taking wonderful care of our son.

I was told last night by yet another one of Daniel’s great nurses that today was a day that I should rest. I haven’t been able to take very good care of myself, since this all happened so fast. Andy has done EVERYTHING he can do to help me and has been my rock. But yet my body needs a lot of healing.

We went and visited Daniel this morning and his nurse told us he is doing great and that he would be “seeing” his first U of M football game today. She was going to have it on the TV in the “pod” he is recovering in. She told us to get some rest as well. So, I had my staples removed (not bad at all – I was expecting a lot worse!) and we moved from the hospital over to the Ronald McDonald House.

I’ve spent the past hour sitting here in the dining room area typing and it is time to go up to our little room with the two twin beds to pump! This place is a blessing as well – we are just a 5 minute walk from the hospital.

We are going to go back up and see Daniel in a couple hours. He is still coming out of anesthesia and is on quite a bit of pain relief, but did flutter his eyes a couple times this morning.

We were told that he might be able to be taken off the ventilator tomorrow – please pray that his heart and lungs are able to handle breathing on his own – this is a HUGE step in his recovery!

Email is probably the best way to get a hold of me right now – beth@terrilynnland.com. I have access to that email on my cell phone at all times. I will try to update this as much as possible – we are currently having some internet issues here at RMH as well.

I say a special thank you to my sister Sarah and friend and co-worker Shana for sending out the email updates for us while we were in the hospital.

We love you all so much and once again, say THANK YOU with our WHOLE HEARTS!!

Andy, Beth and Daniel