One week later

(Well now 3 weeks later…. I have sat down to write this several times over the past 2 weeks and kept getting distracted…newborn life) also… sorry this is so long!

Our sweet little Henry is already THREE weeks old. We are overjoyed to be home and together as a family of four.

I just wanted to update everyone and give some details into our lives over the past couple of weeks.

Henry was born Tuesday (2/9) at 3:17pm. (Details about the day are in previous post) As many of you have seen from pictures, he had to have an OG tube placed shortly after birth but was doing so well with feeding from a bottle and meeting all of his goals after 48 hours, they decided that he would be good without the tube since we weren’t using it. Thursday he was officially off the tube and strictly bottle feeding, again hitting all the goals that they have set for him. We were told Thursday that if he continued to do well with taking a bottle and didn’t lose more weight, then we could go home Friday. At this point we got our hopes up because he had been doing so well and eating what they wanted him to eat that we just knew we would be able to go home the next day.

Friday morning rolls around and we are anxiously waiting for the doctor to come in to tell us we could go home. We knew as soon as he walked in that it wasn’t going to be the case. We were completely and totally heart broken and to be real transparent, I was mad. Once he left I didn’t want to speak to anyone, not even John. I was mad, upsets, heart broken etc. all I was looking forward to was being home as a family of four and seeing Hazel again. At this point I hadn’t seen her in well over 72 hours. I was devastated and missed her more than I thought was possible. I had to excuse myself and just went to take a shower to have some time to myself. I had an emotional breakdown (which was probably a build up of all the emotions a new baby brings). I was finally able to collect myself enough to talk to John about how I was feeling etc, which was definitely good for both of us. We knew that we were selfishly just trying to get home to Hazel as soon as possible, but if the doctor felt that it was best for us to stay one more night, then that’s what we needed to do. We are so thankful for the doctors and nurses that took care of us, they were nothing short of amazing!

Saturday morning/afternoon hits and again we are anticipating that we will get to go home but also trying not to get our hopes up like we did the day before. The doctor comes in and wants to talk to us about him not exactly eating as much as he would like him to. At this point John and I are completely over it and start getting worked up. The only thing we kept thinking about was, the longer we sit here in this hospital, the further out we will be getting to Atlanta to our cleft team. We knew we need to get up there sooner than later to see the feeding specialist that is specifically for cleft babies. We explained this to the doctor and ask that if they aren’t going to send us home, that we be transferred to Atlanta so that we could get help from his cleft team.

The doctor made a phone call to our pediatrician, PRAISE THE LORD, and we all come up with a plan to get us out of the hospital that day. The plan was that we would drop a NG tube back in so that we would have a backup to make sure he was getting the full 50-60ml that they wanted him to get. Finally a couple hours later, we were packing our things up and heading home.

When we got home, we had a good friend there to capture Hazel meeting Henry for the first time. This was such a special moment that I am so glad we were able to capture (but also that we had someone else there and we didn’t have to be on our phones etc and could just soak up the moment). Hazel instantly fell in love with him and was so excited to hold him. She just kept starring at him and touching his little feet. It was PRECIOUS!!!

We followed up with his pediatrician on Tuesday and she removed the NG tube because we hadn’t used it at all. Once we got home Henry started taking more than they wanted him to take (he was just ready to get home too). We called the cleft clinic to make an appointment, which fell on Thursday (2/18).

At this first appointment, we met with our nurses, nutritionist, speech therapist/feeding therapist, orthodontist, and our nurse practitioner, what an AMAZING team. We are so grateful to have this clinic just an hour up the road. They are the #1 cleft clinic in the world and our surgeon has been doing this for over 30 years, so we are confident that he knows what he’s doing.

Due to his cleft being so “large,” they started us on taping. The tape with help keep the cleft/hole from getting any bigger until her gets the NAM device. We got back for a feeding and nutrition follow up this Thursday and then we will meet with our surgeon on Friday. We also have our follow up appointment with the orthodontist on 3/10. This appointment with be for the NAM fitting.

What is a NAM you ask? Good question… NAM stands for: Nasal Alveolar Molding.

Nasal Alveolar Molding (NAM) is a way to treat cleft lip and palate.
• Nasal means that it fits up into the nose.
• Alveolar means that it fits around the gums.
• Molding means that it is a hard, plastic mold.
The NAM mold brings the baby’s lip and gum together by helping to move and reshape the cleft area as he grows. This is needed to prepare him for further cleft repair during surgery.

How does a NAM work?
Our orthodontist will make a plastic mold of his mouth, lip and nostrils.
• The mold will be specially made just for your baby.
• Your baby will wear the mold 24 hours a day for about three to four months.
• The mold is held in the mouth by surgical skin tape. The tape will also help guide the growth of your baby’s face.
• Each week, the orthodontist will reshape the mold. This will help to make your baby’s cleft smaller and reshape his nose.

So now that you know a little bit about how life has been over the past couple of weeks, I ask that you continue to pray for Henry’s birth mother. She is a strong women but I can not imagine all the emotions and heart ache that she might be dealing with. She is someone that we have gotten to form a relationship with over the past couple of months and we love her dearly. We just pray that she knows how much she means to us.

Also I ask that you pray for Henry and all that he is going to have to go through over the next couple of months/ years. They say the NAM device is not easy and will take a toll on all of us, but the outcome is so worth it. Pray that we can figure out how to help with his stomach issues. Due to the cleft, he swallows ALOT of air which causes a lot of gas issues. There are some days that he just screams because it bothers him so bad. (Yes we are using gas drops, probiotics, grip water and reflux medicine to help).

As always, I just want to thank you for all your prayers and support. The prayers are definitely felt and we are so grateful!

God Bless,

Kristen

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