It's taken me awhile to write this post because it's hard to know what to say. James was diagnosed with 22q11.2 deletion syndrome, a genetic disorder due to a partial chromosome deletion, commonly known as Di George syndrome. We got the diagnosis in Wausau and two days later we were transferred to Chicago. Insurance finally agreed to transfer him as all the specialists he has needed to see are in one place at Lurie Children's Hospital.
It's difficult to describe the syndrome because there's so much to it and it varies so much by child, so I won't try. I'll link to a couple of the better websites below.
To start with, his neonatologist suspected something may be up after getting news about his heart defect in combination with his 'small mouth' that we don't think is that small. He was difficult to intubate when he was born and now we're told he has a small jaw as well. Usually whenever there are a couple things a little off, the doctor will get genetics involved as it's their specialty and job to determine what's going on. I remember being upset and still am to hear that anything is 'off' or wrong with James. He is perfect in my mind and always will be. The geneticist that got involved in James' case was in Madison so photos were taken of James to be sent to him. This was a rough morning; the lights were turned on full blast in his room and he was held down in different positions to photograph his head, hands, feet, mouth, throat, everything in multiple positions. Stop examining and scrutinizing my baby like he's a specimen. It was hard to watch, especially because we felt that this was silly and there was nothing wrong. They were wasting their time.
Time went by and one day our nurse came into our room and said that the genetic results were back and that the doctor wanted to speak with us. We had all but forgotten about this. Papa Hoge was visiting and he was asked to leave the room. My heart absolutely stopped beating and hit the floor. I couldn't breathe. I knew something was wrong. James' doctor, nurse, social worker and nurse practitioner all came in the room to give us the news. I don't remember how the conversation went but I just remember feeling like my world was collapsing around me. How can this happen? I have never heard of the diagnosis but I just thought this meant James was going to die young. That was my question, "what will his life expectancy be?" They didn't have too many answers and handed us a printout describing Di George. They also told us not to look too much into it online, that many cases posted online are worst case scenarios and that he may very well be just fine as this syndrome varies greatly.
Bring on the tears. Adam was holding James at the time and I just took him and cried. There was this instant feeling of wanting to protect my baby from everything that was going to come. The tests, the judgements, whatever life will bring and throw his way. It makes me cry just writing this because all I want is for James to live the most normal, happy and healthy life possible -- all things that he may very well have, but we didn't know that at the time.
Fast forward through all the tests that followed. We have basically been told that it has been determined he likely has a mild form of the syndrome. We don't know anything for sure as many issues surface and come with age and him growing and developing. His calcium levels are normal, his lymphocytes are on the high end for the syndrome but a little low for a baby his age, his kidneys are fine, his heart defect is something he can live with for now, he hasn't had any infections that we know of, he doesn't have some of the typical facial features, and he's growing on the normal curve for a preemie. All positives. His feeding issues are where things get confusing. Are they because he is a preemie and these are normal preemie issues or is this the Di George? We don't know. Hence his long stay in the hospital and allowing him to grow, mature and sort things out. We do know there are no obvious palate issues but there may be some hidden issues that aren't easily observed, hence the swallow study we will soon be having.
Until then, just know that this little boy is so loved and is getting the right help and is in the right place to grow into a strong, happy and healthy boy. He will be OK! We go about our days as if this diagnosis hasn't changed anything because really, it hasn't. If anything, it's changed our perspective and we love him that much more. We take everything day by day because that's all we can do.
U.S. National Library of Medicine - 22q11.2 Deletion Syndrome
22Q Foundation
Saturday, August 30, 2014
Mommy update: 6 weeks
Lots of people keep asking how I'm doing and my response is "I'm alright." Really, I feel pretty good. Physically I feel great and mentally I'm getting there. Emotionally I'm a wreck sometimes but I think the tears are fewer and farther between. In general, I'm happy and feel blessed for the good days and the great support we've gotten. There is no pain except for when my tummy is pushed on (like when the cats walk over me or Maggie jumps up on me) and there is still some numbness. I have about a six inch transverse incision below the bikini line that is healing well.
I had my six week follow up visit with my doctors here in Park Ridge this week. I was looking forward to this visit for so many reasons. I couldn't wait to get a lot of things off my chest and put some of the blame, questions, anger, sadness, frustration and disappointment back on the doctors who were supposed to take care of me and I felt like failed me in a way. For a short time I felt like I had failed and had some guilt about not being able to take care of James in my belly (I think a normal feeling for moms of preemies) but that quickly turned into anger and frustration with my doctors. These people that I had trusted to care for me failed me and failed James. Maybe I'm over reacting but with everything we've been through, it's normal to look for answers and to place the blame somewhere. I would rather it be on them than on myself, because that's a tough burden to carry. Really, I know that preterm labor is often no one's fault and that it just happens but at the same time we want answers.
In a nutshell, my appointment went well after the initial tears. I essentially broke down with the nursing assistant when brought back to my room because I had to sit next to a very pregnant lady, probably due around September 11, in the waiting room. That was supposed to be me, but my baby was born too soon and has been in the hospital for six weeks. No fair. I wanted those swollen feet and that waddle and that healthy baby. Some people say that I got to miss the worst of it, but I feel like I missed out.
Anyway, the doctor was warned before she came in that I had a lot to say. We went over all my concerns (which I'll describe more below if anyone cares to hear my rant) and she kindly listened, made some excuses, but in general offered sincere apologies for anything that didn't go well and could have been done differently. She is going to discuss everything that happened with the team of four other doctors I was rotating between and review my ultrasound from July 1 to determine if they could have known then that I was possibly in or going to have early labor and potentially should have been on bed rest or anything. I should get a phone call next week but I don't expect to hear anything that changes much or makes me feel better. In general, I left the appointment feeling 20 lbs lighter and proud of myself for getting things off my chest and placing the blame and guilt elsewhere. Adam felt bad he couldn't be there because of work, but I needed to do this on my own. I did nothing wrong, I couldn't have done anything differently, and at the end of the day I have an adorable baby who will be OK. We are OK and this kind of thing happens. I just didn't expect it to happen to me.
Long rant to follow:
Following my surgery in April I had some issues, namely a couple infections. The first was an infection in one of my wounds which is more common that some would think. Not a big deal, I thought. I brushed this off longer than I should have, I think in denial that anything could go wrong, but finally saw the doctor and was put on an antibiotic that, because of its strength, often leads to other issues if not taken with probiotics. And I ended up with other issues, namely some intense diarrhea that was diagnosed as C diff. I can honestly say I have never been so miserable as I was during the couple days I had to take off work because of frequent trips to the bathroom and being unable to keep food in. Where my issue with my doctors comes in as that I should not have been put on that first antibiotic without some strong warnings about the side effects and what to do to prevent side effects. When I called my doctors crying and begging for help, they turned me away. I was told I had to see my primary doctor for diarrhea. They couldn't test me. "But I feel so bad that I'm going to end up in the hospital. Please just prescribe me something. Help me." They couldn't without knowing what was wrong with me. More tears. The poor nurse probably thought I was crazy because who cries over diarrhea? But it was that bad. I felt that awful. Also, I didn't have a primary doctor so I just saw some random family practice doctor that had the first available appointment. "But why isn't your OB doctor seeing you? You're 28 weeks pregnant." You're right, that's what I said. I wanted to punch someone. Just a nightmare. Anyway, I was put on another antibiotic and started to feel better after a few days.
Fast forward a couple weeks to our vacation up north. Back pain starts and trips to the bathroom start to increase again in frequency. Is the infection back? What's going on? (My doctor in Wausau thought the infection wasn't back but that diarrhea can sometimes be an indicator of labor). James was born a few days later.
My doctor and the nursing staff in Wausau were appalled that I wasn't hospitalized when initially diagnosed with C diff. To quote my doctor, "How long were you hospitalized when they diagnosed you?" What? I wasn't in the hospital. They were shocked. They were convinced I was likely malnourished and definitely dehydrated. Makes sense when you factor in my glucose testing done on July 1, the one where you drink the icky sugary drink and then your blood sugar is tested an hour later to determine the risk of gestational diabetes. I drank the nasty drink and was tested and then got a phone call the next day asking if I had indeed drank the nasty drink. "But your blood sugar is so low, are you feeling alright?" No, not really. I'm not. Remember when I called crying saying I had diarrhea and you turned me away? "Oh that makes sense if you've had diarrhea. I'll talk to the doctor and let you know if you need to be retested." End of story. RED FLAG MUCH? Dehydration is often a cause of preterm labor, among so many other things, and dehydration is so very preventable. I thought I was doing a good job of drinking enough water, Gatorade, Ensure and pedialyte but again I had asked my OB doctors for help and didn't get it.
Also, my placenta. At that July 1 appointment we were told my low lying placenta had resolved and that it had moved to a normal position. My OB doctor who did the c section said that it had not moved, it was a low lying anterior placenta and had I tried to deliver vaginally would have ended up in an emergency c section. Why were we told it had moved? Was the ultrasound tech wrong? Or do placentas just move around a lot? This is something Adam was very upset about because our scary situation leading up to James' birth could have ended up scarier if indeed I had needed an emergency c section.
In general I felt like having five doctors and rotating between them all is not beneficial to anyone. Every time I had an appointment I felt like I had to tell my story because they didn't know what happened and it seemed like they weren't reading my medical chart before seeing me. How are you supposed to do the right thing and know the proper steps and what to do if you don't know the back story? So frustrating and the number one reason I would like to have one doctor following me for any future pregnancies.
Phew. Rant over. Am I being unfair? I just feel like we went through a lot and a lot of it could have been preventable or handled differently.
I had my six week follow up visit with my doctors here in Park Ridge this week. I was looking forward to this visit for so many reasons. I couldn't wait to get a lot of things off my chest and put some of the blame, questions, anger, sadness, frustration and disappointment back on the doctors who were supposed to take care of me and I felt like failed me in a way. For a short time I felt like I had failed and had some guilt about not being able to take care of James in my belly (I think a normal feeling for moms of preemies) but that quickly turned into anger and frustration with my doctors. These people that I had trusted to care for me failed me and failed James. Maybe I'm over reacting but with everything we've been through, it's normal to look for answers and to place the blame somewhere. I would rather it be on them than on myself, because that's a tough burden to carry. Really, I know that preterm labor is often no one's fault and that it just happens but at the same time we want answers.
In a nutshell, my appointment went well after the initial tears. I essentially broke down with the nursing assistant when brought back to my room because I had to sit next to a very pregnant lady, probably due around September 11, in the waiting room. That was supposed to be me, but my baby was born too soon and has been in the hospital for six weeks. No fair. I wanted those swollen feet and that waddle and that healthy baby. Some people say that I got to miss the worst of it, but I feel like I missed out.
Anyway, the doctor was warned before she came in that I had a lot to say. We went over all my concerns (which I'll describe more below if anyone cares to hear my rant) and she kindly listened, made some excuses, but in general offered sincere apologies for anything that didn't go well and could have been done differently. She is going to discuss everything that happened with the team of four other doctors I was rotating between and review my ultrasound from July 1 to determine if they could have known then that I was possibly in or going to have early labor and potentially should have been on bed rest or anything. I should get a phone call next week but I don't expect to hear anything that changes much or makes me feel better. In general, I left the appointment feeling 20 lbs lighter and proud of myself for getting things off my chest and placing the blame and guilt elsewhere. Adam felt bad he couldn't be there because of work, but I needed to do this on my own. I did nothing wrong, I couldn't have done anything differently, and at the end of the day I have an adorable baby who will be OK. We are OK and this kind of thing happens. I just didn't expect it to happen to me.
Long rant to follow:
Following my surgery in April I had some issues, namely a couple infections. The first was an infection in one of my wounds which is more common that some would think. Not a big deal, I thought. I brushed this off longer than I should have, I think in denial that anything could go wrong, but finally saw the doctor and was put on an antibiotic that, because of its strength, often leads to other issues if not taken with probiotics. And I ended up with other issues, namely some intense diarrhea that was diagnosed as C diff. I can honestly say I have never been so miserable as I was during the couple days I had to take off work because of frequent trips to the bathroom and being unable to keep food in. Where my issue with my doctors comes in as that I should not have been put on that first antibiotic without some strong warnings about the side effects and what to do to prevent side effects. When I called my doctors crying and begging for help, they turned me away. I was told I had to see my primary doctor for diarrhea. They couldn't test me. "But I feel so bad that I'm going to end up in the hospital. Please just prescribe me something. Help me." They couldn't without knowing what was wrong with me. More tears. The poor nurse probably thought I was crazy because who cries over diarrhea? But it was that bad. I felt that awful. Also, I didn't have a primary doctor so I just saw some random family practice doctor that had the first available appointment. "But why isn't your OB doctor seeing you? You're 28 weeks pregnant." You're right, that's what I said. I wanted to punch someone. Just a nightmare. Anyway, I was put on another antibiotic and started to feel better after a few days.
Fast forward a couple weeks to our vacation up north. Back pain starts and trips to the bathroom start to increase again in frequency. Is the infection back? What's going on? (My doctor in Wausau thought the infection wasn't back but that diarrhea can sometimes be an indicator of labor). James was born a few days later.
My doctor and the nursing staff in Wausau were appalled that I wasn't hospitalized when initially diagnosed with C diff. To quote my doctor, "How long were you hospitalized when they diagnosed you?" What? I wasn't in the hospital. They were shocked. They were convinced I was likely malnourished and definitely dehydrated. Makes sense when you factor in my glucose testing done on July 1, the one where you drink the icky sugary drink and then your blood sugar is tested an hour later to determine the risk of gestational diabetes. I drank the nasty drink and was tested and then got a phone call the next day asking if I had indeed drank the nasty drink. "But your blood sugar is so low, are you feeling alright?" No, not really. I'm not. Remember when I called crying saying I had diarrhea and you turned me away? "Oh that makes sense if you've had diarrhea. I'll talk to the doctor and let you know if you need to be retested." End of story. RED FLAG MUCH? Dehydration is often a cause of preterm labor, among so many other things, and dehydration is so very preventable. I thought I was doing a good job of drinking enough water, Gatorade, Ensure and pedialyte but again I had asked my OB doctors for help and didn't get it.
Also, my placenta. At that July 1 appointment we were told my low lying placenta had resolved and that it had moved to a normal position. My OB doctor who did the c section said that it had not moved, it was a low lying anterior placenta and had I tried to deliver vaginally would have ended up in an emergency c section. Why were we told it had moved? Was the ultrasound tech wrong? Or do placentas just move around a lot? This is something Adam was very upset about because our scary situation leading up to James' birth could have ended up scarier if indeed I had needed an emergency c section.
In general I felt like having five doctors and rotating between them all is not beneficial to anyone. Every time I had an appointment I felt like I had to tell my story because they didn't know what happened and it seemed like they weren't reading my medical chart before seeing me. How are you supposed to do the right thing and know the proper steps and what to do if you don't know the back story? So frustrating and the number one reason I would like to have one doctor following me for any future pregnancies.
Phew. Rant over. Am I being unfair? I just feel like we went through a lot and a lot of it could have been preventable or handled differently.
James is 6 weeks!
James is 6 weeks old! Going on 7 as I'm slow to post...
On August 25, his official 6 week birthday, he weighed 5 lbs 7 oz and was up to 45 ml per feeding every three hours. (Three days later up to 50 ml per feeding and nearly 6 lbs!). He's taking formula thickened with rice cereal by bottle because they're worried he's drinking too much too fast and possibly aspirating (going in his lungs) or that the milk is going up into his nose and causing him to stress out. Still getting breast milk via his NG feeding tube when we don't try the bottle.
Per my request, we tried regular thin breast milk by bottle the other day and after initially doing well he had a brady episode. This also happened once last week when we tried breastfeeding. Frustrating for us as he was taking thin milk in Wausau but our speech therapists here say that's common for babies that are started with feeding too soon; they initially may do well giving parents false hope and then kinda poop out and their abilities really drop before maturing and being able to feed well. Their theory here in Chicago is "quality feeding vs. quantity," they would rather he take smaller amounts by bottle but with good technique as opposed to before we were just looking for quantity. Makes sense in theory but the goal to get home is to take full bottle feedings so quantity is the ultimate goal. Essentially what we do is pace James with feedings; we give him three sucks by bottle and then give him a 5-6 second breathing/swallowing break by tilting the bottle down. It takes a lot of patience but we've been told by the speech therapists we are both very patient with him and do well. Thumbs up mom and dad!
James is officially off the flow, or vapotherm machine, as of August 18th. They decided to give it a try and came to take it off and James had already pulled it off himself. I guess he felt it was time too! Strong little man also regularly pulls out his NG tube. He had a good couple of days afterwards and then started to have some more desaturations and brady episodes which we fully expected as had been the trend anytime the flow was taken off before. Their theory was to give him the benefit of the doubt and see if he'd work through it and he definitely has. Fingers crossed but I think the vapotherm machine is officially history.
This next week we're anticipating a swallow study to determine what's really going on with James' feeding difficulties. This brought me to tears because I feel like, depending on the results, we're still looking like we're weeks away from discharge depending on what they see and what they decide to do. We're fast approaching my due date, September 11, and still have no timeline on a discharge for him. Adam has long been able to accept that we cannot put any dates in our head or really any great expectations regarding discharge, but I thought for sure he would come home by his due date. It's not looking like that will happen so I'm trying hard to have no expectations. Weeks ago in Wausau I remember being told he likely wouldn't be home until this time and that made me absolutely break down. Now we're adding to that and don't even have a possible date in mind. Funny how you can just become numb to things and the hospital and NICU are just our new normal.
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| Working with the OT |
On August 25, his official 6 week birthday, he weighed 5 lbs 7 oz and was up to 45 ml per feeding every three hours. (Three days later up to 50 ml per feeding and nearly 6 lbs!). He's taking formula thickened with rice cereal by bottle because they're worried he's drinking too much too fast and possibly aspirating (going in his lungs) or that the milk is going up into his nose and causing him to stress out. Still getting breast milk via his NG feeding tube when we don't try the bottle.
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| Thrilled to be working with PT |
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| Wide awake after diaper change |
Per my request, we tried regular thin breast milk by bottle the other day and after initially doing well he had a brady episode. This also happened once last week when we tried breastfeeding. Frustrating for us as he was taking thin milk in Wausau but our speech therapists here say that's common for babies that are started with feeding too soon; they initially may do well giving parents false hope and then kinda poop out and their abilities really drop before maturing and being able to feed well. Their theory here in Chicago is "quality feeding vs. quantity," they would rather he take smaller amounts by bottle but with good technique as opposed to before we were just looking for quantity. Makes sense in theory but the goal to get home is to take full bottle feedings so quantity is the ultimate goal. Essentially what we do is pace James with feedings; we give him three sucks by bottle and then give him a 5-6 second breathing/swallowing break by tilting the bottle down. It takes a lot of patience but we've been told by the speech therapists we are both very patient with him and do well. Thumbs up mom and dad!
James is officially off the flow, or vapotherm machine, as of August 18th. They decided to give it a try and came to take it off and James had already pulled it off himself. I guess he felt it was time too! Strong little man also regularly pulls out his NG tube. He had a good couple of days afterwards and then started to have some more desaturations and brady episodes which we fully expected as had been the trend anytime the flow was taken off before. Their theory was to give him the benefit of the doubt and see if he'd work through it and he definitely has. Fingers crossed but I think the vapotherm machine is officially history.
This next week we're anticipating a swallow study to determine what's really going on with James' feeding difficulties. This brought me to tears because I feel like, depending on the results, we're still looking like we're weeks away from discharge depending on what they see and what they decide to do. We're fast approaching my due date, September 11, and still have no timeline on a discharge for him. Adam has long been able to accept that we cannot put any dates in our head or really any great expectations regarding discharge, but I thought for sure he would come home by his due date. It's not looking like that will happen so I'm trying hard to have no expectations. Weeks ago in Wausau I remember being told he likely wouldn't be home until this time and that made me absolutely break down. Now we're adding to that and don't even have a possible date in mind. Funny how you can just become numb to things and the hospital and NICU are just our new normal.
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| So big! |
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| Favorite picture. First time wearing socks. |
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| This boy is so loved. |
Tuesday, August 19, 2014
James' first few days in photos
We kept telling our team we just wanted to hold him and they made it happen. The day after he was born they removed his breathing tube and we were able to hold him that evening. I remember being nervous and felt like I was going on a first date with my little guy. I even got to shower! There was no question that I would be the first person to hold him and I've never felt so special before. This little baby was mine.
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| Love this. Proud Daddy. |
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| Finally holding our baby. Pure happiness. |
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| Mr. Button, my little old man. |
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| James' first baseball and Grandma Jay watching over him always. |
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| James spent a lot of time under the bili light for his jaundice. He seemed to love this and was adorable in his shades. |
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| Celebratory meal |
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| So much food, no appetite |
James' Birthday in Photos
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| A gift from our lovely nurse, Lisa. She had worked at St. Mary's in Madison around the time I was born, and also knew Adam's aunt and uncle. Small world! She said we felt like family to her and wanted to make sure James had a memento of his Wisconsin birth. |
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| Finally got to 'wash' my hair. |
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| He had a little bruise on his head from the birth and was intubated for just over 24 hours. |
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| So many lines. This reminds me how far he has come. |
James' Birthday
7 am, July 14. Once the c section was a go ahead, things moved very quickly. My amazing new nurse came on at this time and prepped me. I remember being half passed out, poked and prodded several times as well as signing some papers without having the slightest idea what they said. I think I was so tired, scared, shocked and in pain that my body's way of protecting myself was to block things out. I also wonder if the amount of blood I was losing was enough to make me woozy.
He was beautiful. Perfect. "He's so big!" I don't know what I expected, but he looked much bigger than what I had anticipated for a preemie baby to be. He also looked exactly how I had pictured him. Adam asked, "What do you think? Is he a James?" and I said yes. They whisked him away to the NICU and Adam went with, only after stopping to show him off quickly to my parents who were waiting just outside. My mom says she has never seen Adam smile so big and look so proud.
The rest of this morning is an absolute blur to me. I was taken to my new room and rolled around and bundled up and poked and and all of that. My favorite game to play is to ask Adam and my parents about that morning; what did I do? What did I say? I have very little memory of it, just glimpses here and there. I do know that the goal was to get the sensation back in my legs enough so that I could get in a wheelchair to go officially meet James. At one point, I remember being totally numb and trying my best to just wiggle my toes. I looked down and my legs were moving around in the bed! What a weird sensation.
At some point, either late morning or early afternoon, I was helped into the wheelchair and wheeled upstairs to the NICU. Again, very foggy memories of this which make me sad because I don't remember much of my first official visit with James. I do remember asking for the trash can and getting sick in his room and then being sent back to my room. Whoops. Great first impression, momma.
What a day. We're so blessed and happy to have this little guy in our lives. I only wish I remembered more of it and that I had had that 'moment' when he first came into the world and let out a big, strong cry.
Happy Birthday, James Matthew Hoge. We love you!
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| Dressed and ready! |
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| Family of two about to be three |
Off to surgery I went and first up was the epidural. They wanted me sitting in a certain position on the surgical table and I couldn't manage it because I kept having contractions. Eventually we compromised and all that I remember is hunching over and leaning against my nurse who was giving me a pep talk, I think to prevent me from passing out in her arms. I wasn't afraid of the epidural, and honestly didn't feel anything, I just really felt like I was going to tip over and just lose it. Once that epidural was in and done, my legs were gone and they slowly laid me down on the table. Instant relief. Instant swarming of people hooking me up to this and that, pricking and poking me to check sensation. It felt like maybe two minutes went by and my doctor was starting the surgery. I could hear clinking and clanking and suction and chatter but couldn't tell what people were saying. It felt very rushed and I don't even think Adam was in the room yet when they started.
Adam appeared over my left shoulder and I think he was more afraid than I was. I think he tried to hold my left hand, but I remember feeling strapped down and so heavy. Maybe my arms were strapped down? I don't remember. He felt like he couldn't breathe, I think from his mask and just nerves so I'm trying to tell him it's OK and he's trying to calm me and we were just a mess. More clinking and clanking and chatter and suction and I just start to feel nauseous. Then vomit comes. Luckily I turned to the right and puked that way, but in my strapped down and heavy state it was difficult to do. Someone held me a little bucket and I was good to go. I couldn't look to my left at Adam because that kept making me feel sick, so I just looked to the right while Adam was busy trying to breathe and that's the way it went.
Sometime after 7:38 am I asked, "is he out?" and they said yes. I didn't even know it. No cries, they didn't even hold him up for me to see. All of the excitement leading up to having your baby and there was no 'moment' were I got to see him. I do remember them saying, "Oh, it is a boy" like I had any doubt in my mind. At some point Adam was invited to the adjoining room to see him. He could have been gone for a minute or an hour, I don't know but it felt like an hour to close me up. Adam says that when he came back in they didn't warn him which way to look or not to look so he got to see my "insides and lots of blood." He still is upset about this.
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| First apgar score was a 2. No bueno. |
My only real vivid memory of this morning was when James was wheeled by me for our first meeting. We had agreed not to officially name him until we got to see him, just to make sure the name we had picked out 'fit' him. What if he didn't look like a James?
The rest of this morning is an absolute blur to me. I was taken to my new room and rolled around and bundled up and poked and and all of that. My favorite game to play is to ask Adam and my parents about that morning; what did I do? What did I say? I have very little memory of it, just glimpses here and there. I do know that the goal was to get the sensation back in my legs enough so that I could get in a wheelchair to go officially meet James. At one point, I remember being totally numb and trying my best to just wiggle my toes. I looked down and my legs were moving around in the bed! What a weird sensation.
At some point, either late morning or early afternoon, I was helped into the wheelchair and wheeled upstairs to the NICU. Again, very foggy memories of this which make me sad because I don't remember much of my first official visit with James. I do remember asking for the trash can and getting sick in his room and then being sent back to my room. Whoops. Great first impression, momma.
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| First family photo |
What a day. We're so blessed and happy to have this little guy in our lives. I only wish I remembered more of it and that I had had that 'moment' when he first came into the world and let out a big, strong cry.
Happy Birthday, James Matthew Hoge. We love you!
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