I am no track star, but over the past 6 months, I have had quite the hurdles to jump!
First, it was the pre-term contractions and hospitalizations at 24 weeks of my pregnancy.
Then, that pain continued even with medication, which meant modified bedrest. Thank goodness for the help of my mom, who moved in with us to help out for almost 4 months.
Next up, getting to the hospital to deliver our little monkey, only to be told that he was breech and I would need a c-section ASAP. I was not prepared for that, but would endure whatever I needed to in order to get him here safely.
Within minutes of being born, we were handed our next hurdle on a silver platter...Will had a birth defect, a bilateral cleft soft palate. Being that I had this same defect when I was born, I knew that he would ultimately need surgery!
The feeding issues were next to overcome. Without his soft palate, he has very little sucking power. Therefore, he is not able to drink from a regular bottle. We were given special therapeutic bottles and nipples at the hospital and trained on how to use them by an occupational therapist. We thought these were beginning to work until the other day at his feeding observation required by the craniofacial surgeon. However, we were told that he was taking far too long to eat. He was taking about 40-45 minutes to get approximately 60 mL (2 oz) of formula down. After about 25-30 minutes, the muscles in your throat and tongue get very fatigued. Therefore, he was working harder than he needed to, thus causing him to burn more calories than he was actually taking in. We were then given new preemie nipples that were manipulated to have a slightly faster flow while still having the softness of the preemie nipple. It worked great in that observation. He downed almost 100mL in only 20 minutes. However, the moment we got home, this success stopped. So, a call to the speech/occupational therapist today is in order to get this figured out.
We also met with the craniofacial surgeon last week and were told that the surgery to repair his cleft would be early next summer. When they evaluated him, it was discovered that the hole in his roof was actually wider than usual and it also included some of his hard palate. This may only require one surgery, but possibly two...but that will be a hurdle for later.
Next up, a sleep study this weekend. The surgeon was a little concerned about his breathing at night. He asked if they checked/monitored his oxygen levels while sleeping in the hospital using the pulse/ox monitors (the little red light they put on your finger or on a baby's toes). He was not. Since Will makes lots of snorting and gurgling noises round the clock (sounds very similar to the noise you make when sucking up the very last drops of your drink through a straw), he is slightly concerned. He said we need to rule out sleep apnea as a lack of oxygen could stunt brain development. As you can imagine, hearing this scared the you-know-what out of me! The doctor was relieved to hear that we have him sleeping on his tummy as that is the best position for cleft palate babies. The gravity can pull his tongue forward and out of the roof of his mouth when he is on his tummy and not on his back (where gravity could work against us and cause him to choke). It is entirely possible that he is fine and does not have sleep apnea, but we need to rule that out with a sleep study. So, Will and I will be going to the hospital overnight this coming Sunday where they will hook him up to some monitors and place little nodes all over his head to observe his levels overnight. Luckily, it is Labor Day weekend and Matt has Monday off from work. So, he will stay with Max and Cate and won't have to work that day, so that I can nap all day after being at the study all night with the baby.
There may also be a need for a swallow study to make sure that the formula is going in its entirety to the stomach as opposed to partially going into his lungs. Because he cannot form a perfect seal as you or I do when we swallow, there is a chance that some of his fluids are going into his lungs which could later cause pneumonia. He spits up quite a bit and when he does, it often comes out his nose (because it is all open from the roof of his mouth to his nasal cavity. He also has a higher tendency to develop acid reflux.
On top of all of this, I am learning how to balance daily life with 3 kids, two of which are now in school and several activities.
It has definitely been a track meet of sorts for me and I know that I still have the semi-finals and championships ahead of me! Please keep us in your thoughts or prayers for Will's continued healing and my sanity!
First, it was the pre-term contractions and hospitalizations at 24 weeks of my pregnancy.
Then, that pain continued even with medication, which meant modified bedrest. Thank goodness for the help of my mom, who moved in with us to help out for almost 4 months.
Next up, getting to the hospital to deliver our little monkey, only to be told that he was breech and I would need a c-section ASAP. I was not prepared for that, but would endure whatever I needed to in order to get him here safely.
Within minutes of being born, we were handed our next hurdle on a silver platter...Will had a birth defect, a bilateral cleft soft palate. Being that I had this same defect when I was born, I knew that he would ultimately need surgery!
The feeding issues were next to overcome. Without his soft palate, he has very little sucking power. Therefore, he is not able to drink from a regular bottle. We were given special therapeutic bottles and nipples at the hospital and trained on how to use them by an occupational therapist. We thought these were beginning to work until the other day at his feeding observation required by the craniofacial surgeon. However, we were told that he was taking far too long to eat. He was taking about 40-45 minutes to get approximately 60 mL (2 oz) of formula down. After about 25-30 minutes, the muscles in your throat and tongue get very fatigued. Therefore, he was working harder than he needed to, thus causing him to burn more calories than he was actually taking in. We were then given new preemie nipples that were manipulated to have a slightly faster flow while still having the softness of the preemie nipple. It worked great in that observation. He downed almost 100mL in only 20 minutes. However, the moment we got home, this success stopped. So, a call to the speech/occupational therapist today is in order to get this figured out.
We also met with the craniofacial surgeon last week and were told that the surgery to repair his cleft would be early next summer. When they evaluated him, it was discovered that the hole in his roof was actually wider than usual and it also included some of his hard palate. This may only require one surgery, but possibly two...but that will be a hurdle for later.
Next up, a sleep study this weekend. The surgeon was a little concerned about his breathing at night. He asked if they checked/monitored his oxygen levels while sleeping in the hospital using the pulse/ox monitors (the little red light they put on your finger or on a baby's toes). He was not. Since Will makes lots of snorting and gurgling noises round the clock (sounds very similar to the noise you make when sucking up the very last drops of your drink through a straw), he is slightly concerned. He said we need to rule out sleep apnea as a lack of oxygen could stunt brain development. As you can imagine, hearing this scared the you-know-what out of me! The doctor was relieved to hear that we have him sleeping on his tummy as that is the best position for cleft palate babies. The gravity can pull his tongue forward and out of the roof of his mouth when he is on his tummy and not on his back (where gravity could work against us and cause him to choke). It is entirely possible that he is fine and does not have sleep apnea, but we need to rule that out with a sleep study. So, Will and I will be going to the hospital overnight this coming Sunday where they will hook him up to some monitors and place little nodes all over his head to observe his levels overnight. Luckily, it is Labor Day weekend and Matt has Monday off from work. So, he will stay with Max and Cate and won't have to work that day, so that I can nap all day after being at the study all night with the baby.
There may also be a need for a swallow study to make sure that the formula is going in its entirety to the stomach as opposed to partially going into his lungs. Because he cannot form a perfect seal as you or I do when we swallow, there is a chance that some of his fluids are going into his lungs which could later cause pneumonia. He spits up quite a bit and when he does, it often comes out his nose (because it is all open from the roof of his mouth to his nasal cavity. He also has a higher tendency to develop acid reflux.
On top of all of this, I am learning how to balance daily life with 3 kids, two of which are now in school and several activities.
It has definitely been a track meet of sorts for me and I know that I still have the semi-finals and championships ahead of me! Please keep us in your thoughts or prayers for Will's continued healing and my sanity!
11 comments:
You are handling everything very well but know we are always there for you. and of course, you are all in our prayers. I promise that God never geives you more than you can handle. Love you, Mom
Wow! You are an amazing Mom. You are being strong and seemed etremely with it this weekend. I'm with your Mom, GOd won't give you anything you can't handle. But, you are still in my prayers.
I have to tip my hat to you! You are an amazing mom to your 3 beautiful kiddos and seem to be handling your bumps in the road with amazing courage and grace. I know how hard it is to have a baby that doesn't meet society's definition of "perfect" and all I can say is Will is already ahead of the game by having a mom like you! Keep up your faith and know that everything will work out!
Keeping you all in my prayers. Your mom is right. You are doing an amazing job. Don't forget to lean on others too. We can't do it all ourselves.
oh my goodness what a full platter! I am holding out for good news all around...keep us posted!
Oh hon - I am definitely praying for you and for baby William. <3
I know firsthand how hard it can be when God blesses you with a baby who brings along some unexpected challenges. But I know that you and Matt--with the help of your amazing family--will get through this.
I'm keeping you in my prayers.
XO
Oh man. That really is a lot. One thing after another.
Keeping you in my prayers!!!!
Hang in there momma - if there's anyone who can do this it's you! What we won't do for our kiddos, huh? Praying for you all - and that you can get some answers, soon - it seems like having no answers is worse than having a bad one. At least for me it is.
Allison, I saw your pictures on Facebook, and I came over to see what's going on. I'm so sorry to hear of all these struggles! I will be praying for you guys.
I'm thinking of you. You are amazing - and you will get through all of this :)
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