Headed back to CHOP for Genetics Testing. I wasn't planning on doing this because I am not really concerned as to the WHY of her hearing loss. Originally, I figured when she was older and if she wanted to know why we would do it then. However, it is part of the required workup for a CI. Basically they did a bunch of measurements. Everything from the spacing between her eyes to the length of the digits of her fingers and so many more. They asked a bit of family history and then a blood draw. We will hear in four to six weeks.
We did also volunteer to be part of a 'study group'. They just had to take a little extra vile of blood for that department.
Thursday, April 17, 2008
Friday, April 11, 2008
April 10 - First TOD Therapy
Yvonne came today! She is Mikaela's TOD (Teacher of the Deaf) and I think she is really great. I heard wonderful things about her from the staff at CHOP as well. She talked to me about showing Mikaela how to respond to sounds in the environment. Imagine you are a baby, playing with Mom or Dad. All of a sudden the dog starts barking and running to get a toy, Mom and Dad get up and walk away. Next thing you know there is a person standing in the kitchen. What just happened? You and I know....However a deaf child -even with hearing aids- most likely never heard the doorbell ring. So it is our job to take her to the door and let her hear the knock or doorbell. Even if we have to stage it. Likewise with the phone, vacuum, coffee maker, toilet flushing, etc. These are things that a hearing child will put together on her own. A deaf child has to be shown how the circle completes. We will do this as well with outside sounds, people sounds, animals, and toys.
Next we learned to sign "I Love You" (the Barney song). We love to sing around here no matter how awful we sound! :-)
Lastly, Yvonne let me borrow the John Tracy Clinic manual for Distance Education for Parents of Young Children Who are Deaf and Hard-of-Hearing. I jumped on the website and ordered my own copy. It seems like a wonderful resource. Upon completion of each section, I will respond to an assessment/survey and they send out the next one. Most of you know I love to learn and I am anxious to get started!
Next we learned to sign "I Love You" (the Barney song). We love to sing around here no matter how awful we sound! :-)
Lastly, Yvonne let me borrow the John Tracy Clinic manual for Distance Education for Parents of Young Children Who are Deaf and Hard-of-Hearing. I jumped on the website and ordered my own copy. It seems like a wonderful resource. Upon completion of each section, I will respond to an assessment/survey and they send out the next one. Most of you know I love to learn and I am anxious to get started!
April 9th - Audi appt & Surgery Post-Op
Spending the day at CHOP! Mikaela has an appointment with the audiologist at 11 a.m. Erin took new molds and also turned up the hearing aids a bit to give her a touch more power. Maybe we'll see more response as she continues to learn to listen. This time we picked out clear pink molds with pink glitter in them! Too fun!
At 2:30, Mikaela has an appointment for her malrotation surgery follow up. We got there about 2 and we weren't seen until 4:20 p.m. UGH! Luckily Juliana met a few children and played while we waited. Mikaela ate and was very good the rest of the time. As usual! I swear this child has a smile from the moment she opens her eyes to the moment she closes them at night! What a blessing she is. Anyway, I digress!..... Everything was A-OKAY regarding her recovery. The scar looks great. She is progressing quite well. Her sensitive GI stuff is still being chalked up to her acid reflux. I hope it all passes very soon!
At 2:30, Mikaela has an appointment for her malrotation surgery follow up. We got there about 2 and we weren't seen until 4:20 p.m. UGH! Luckily Juliana met a few children and played while we waited. Mikaela ate and was very good the rest of the time. As usual! I swear this child has a smile from the moment she opens her eyes to the moment she closes them at night! What a blessing she is. Anyway, I digress!..... Everything was A-OKAY regarding her recovery. The scar looks great. She is progressing quite well. Her sensitive GI stuff is still being chalked up to her acid reflux. I hope it all passes very soon!
April 1 - IFSP Meeting
Not too much to report here. Just reiterating all that was discussed at the evaluation and restating the recommendations. Kurt and I were to come to this meeting with our goals for Mikaela. At this time, I just want her to be "on track" for her age physically. I want the family to learn ASL because I believe it is important for us all to know Mikaela's language. That is who she is. She is a beautiful, happy girl who has unlimited potential to become whatever she desires and she also happens to be deaf. We will benefit from knowing how to communicate with ASL. Should her hearing aids be in the shop for repair, we will benefit from knowing ASL. If she receives the implant and we are swimming at the beach, we will all benefit from knowing ASL. There will be many other occasions that we will benefit from knowing ASL. Regarding her listening, I am committed to having her hearing aids on during all waking hours. A normal hearing child hears something like one million words by the time he is one. For a normal hearing child 90 percent of learning is incidental - meaning he picks it up by listening and watching what is going on. For a child with a hearing loss, that number drops dramatically depending on the severity of the loss. For Mikaela, we don't know what sound is getting in. We know that there is sound, but we aren't sure how muffled or distorted it is. It is still my intention to give her every opportunity to process what ever she can.
From here, her TOD and PT will begin within 45 days - as stated by law.
From here, her TOD and PT will begin within 45 days - as stated by law.
Tuesday, April 1, 2008
March 31 - 4 mo. Well Visit
Well, I just want to go to the doctor and leave with him saying, "Everything looks right on track. See you next month." NO! Mikaela's head grew a full inch in the past two months and 'normal' growth is 1/2 inch in two months. So this means we have to "monitor" her for Hydrocephalus. i.e. water on the brain. There is a range of severity one may have this condition. Some have it and never even know it. They just have big heads. Some have it worse. If she has this condition and if she has it severely, the plan is to do surgery and put in a shunt to drain the excess fluid from the brain.
My nerves!! I am a bit beside myself.
Dr. Jay said we'll just wait and measure again next month. Yeah, right! Don't you think for one minute that I won't be taking out my tape measure EVERY SINGLE MONDAY!!
This baby girl continues to remain on every prayer chain going! Thank you all for your continued support and prayers!
My nerves!! I am a bit beside myself.
Dr. Jay said we'll just wait and measure again next month. Yeah, right! Don't you think for one minute that I won't be taking out my tape measure EVERY SINGLE MONDAY!!
This baby girl continues to remain on every prayer chain going! Thank you all for your continued support and prayers!
March 30 - Baptism
What a fabulous day! Mikaela was baptized! Mom-Mom and Pop-Pop came up from Florida. I can't tell you how special it is to be surrounded by family and good friends on these special occasions. Mass was at 11:30. Father John didn't pronounce one baby's name correctly! It was a riot. Mikaela was baptized as Mikalayla! :-) It's okay - God knows her name!
We came back to the house for some hoagies, pasta salad, cole slaw, olives, pickles, cake, coffee, cookies etc. We opted for a bit more casual affair this time around. Too difficult to warm food when we are all at church!
It was a beautiful day and thank you to each of you for your love and support!
March 28 - Info Mtg
Today we went over to CHOP for a Cochlear Implant informational meeting. The CI audiologist explained to us and showed us the actual devices from Advanced Bionics and Cochlear Corp. He explained the processor and how it "grows with children". He briefly discussed the surgery. He explained how this is not a cure - just a different type of aid. All in all, there wasn't really any new information here for me. I have been researching and also learned most of what he shared at the parent panel.
March 22
Okay! I am just going to lose my mind! Just when I think we are doing well and the formula think is rectified...she THREW UP AGAIN!! This is just crazy! What is the deal with her little intestines/digestive tract???
I don't care...I am switching her to Alimentum. So what if it will cost us like ten dollars a day! She needs to be comfortable and she needs to be well.
Please let this be the answer!
I don't care...I am switching her to Alimentum. So what if it will cost us like ten dollars a day! She needs to be comfortable and she needs to be well.
Please let this be the answer!
Juliana's Birthday
My Juliana is FOUR today! What a wonderful day. She got her beloved Teapot Palace of which she has been "saving up" for months! We played with it for most of the day. We went out to dinner at 8 p.m.! Yikes! A bit late, but both girls did beautifully! We went to Mikado for sushi...one of Juliana (and Mama's) favorites! Nan, Grandmom W. and Aunt Kathy came to visit. Another one of Juliana's favorite gifts was her very first Webkinz - a Clydesdale Horse she named Bows. Here we go!!!
March 18 - Meet the Team
Today the Early Intervention team comes for Mikaela's evaluation. They ask a series of questions about what Mikaela is presently doing, her eating, sleeping habits. What she is able to do physically and her responses to people and the way she interacts. They also do a physical "exam" of sorts and determine what her needs may be.She obviously qualifies for a TOD (Teacher of the Deaf). The TOD teachs us how best to help her. Yvonne is proficient in ASL and will teach us. She will answer any questions about Mikaela's learning and even keep us informed about deaf events in the area. She shares books/resources. Others I have spoken to say Yvonne is very good at what she does.
Mikaela needs physical therapy too as she is delayed in head and core muscle control. They said often once she gets caught up with PT, she may need OT (Occupational Therapy) for fine motor skills.
Early Intervention also offers a social worker to come out and share information with us...we'll take advantage of that as well. Why not?
One of the women believe that Mikaela may be in a bit of a sensory shut down due to all the trauma she has endured thus far. She is having trouble self-regulating. For example, she doesn't always wake up for feedings. I have to set the alarm to get up an feed her over night. At this age, she shouldn't be going 9 hours without eating! :-)
Her cognitive area is good. She is very attentive, can hold a toy, did a lovely job mouthing, holding and watching the rattle. She reached for a toy, dropped one to reach for a second. Social-Emotional was strong. She is very sociable and happy baby. She vocalizes to respond to the family. She often mimics facial expressions and is very aware when you change your expression.
Some areas of the evaluation she scored under her current age. Like I stated above, her gross motor and fine motor abilities are that of a newborn. Admittedly, I coddled her quite a bit with all that she's been through. Specifically, due to the acid reflux and surgery, I have not worked with her on tummy time and I cradle her most often. With the other children, I would bounce them, let the push to a stand on my lap, do raspberries on their tummy, etc. With Mikaela's fragile state, I held her like an infant. Truthfully, she doesn't push back with her legs like my other two did when I put her on my lap. She just lets her legs fold up. She is still working on early neck control. She hold her head latterally bent to the left. Two weeks ago it was to the right. She has a hard time relaxing to bend at the waist. She stiffens up - another reason I just held her often in that "infant cradle" hold. She isn't showing a morrow reflex (extension when suspended) most likely due to lack of overal tone and muscle control.
Regarding her fine motor development, she has discovered her hands and will open her right hand to reach for an object. She can grasp an object placed close to her right hand and holds it, manipulates it and brings it to her mouth for about 45 seconds. She will still hold her hands in fists and tightens all across her shoulders. She bends at the elbows to compensate when working on any postural demand (supported sitting, tummy time or even over the shoulder for a burp.) While working on tummy time, she will only prop up on her elbows when given help. She briefly pushed up on extended arms with hands in fists when she wanted off her tummy. She will lift her head briefly to look at/follow a motivating person or toy. She is not yet reaching toward an object while on tummy, but does a beautiful job of being interested and actively engaged when she is fully supported posturally (semi-reclined on her back).
So, our next step is an IFSP meeting to set this evaluation to a plan and begin receiving services.
March 14 B-Day celebration
Well, today is supposed to be a big March Birthday Celebration!!! There are five Mom's in one of my playgroups (There used to be six until Brook moved to Connecticut today). Of the five Moms, four of us have children born in March. This year I offered to host our party. We are having a zoo animal/dinosaur theme - Thanks for your help Wendi and Nicole! However, the party may not be going off. Mikaela threw up again!! I took her over to Dr. Jay because I am frantic. Of course there is nothing apparently wrong with her. Again, maybe a reaction to formula. Switching from Good Start to the Lactose Free brand. Maybe, just maybe that's what it is....
By the afternoon, she was acting like her old self, so ON WITH THE PARTY! What a great afternoon! The weather was wonderful! The children were outside on the swingset before the craft and snacks. Allie, Ean, Nick, Adam, and Juliana seemed to really enjoy themselves!
By the afternoon, she was acting like her old self, so ON WITH THE PARTY! What a great afternoon! The weather was wonderful! The children were outside on the swingset before the craft and snacks. Allie, Ean, Nick, Adam, and Juliana seemed to really enjoy themselves!
March 13 - Parent Panel
Very interesting!!! We went to a Parent Panel tonight at CHOP. The discussion was Cochlear Implants. There were about 5 families - well the parents - sharing each of thier child's story of their hearing loss, implant surgery/recovery, and how they are managing now. We were able to write down questions to ask and they answered them.
It was very cool. A few things that stuck out for me: One - a two year old with a profound hearing loss at birth, who just had her second implant activated yesterday. She was climbing on a bookshelf that for obvious reasons her mother forbid and Mom was yelling, "NO, NO, NO!!" Her daugher, without missing a beat, and without turning around, signed back, "YES, YES, YES!!" She heard Mom! No signing, no speechreading, no visual cues....just heard her. Tell me that isn't a miracle of sorts. The second was a boy - just over a year - having one implant was playing in the family room on the floor. Several feet away, Dad was sitting in a chair reading and his stomach growled. The boy went over an poined to Dad's stomach. He heard a stomach growl.... These are deaf children hearing things in their environment.
It was very cool. A few things that stuck out for me: One - a two year old with a profound hearing loss at birth, who just had her second implant activated yesterday. She was climbing on a bookshelf that for obvious reasons her mother forbid and Mom was yelling, "NO, NO, NO!!" Her daugher, without missing a beat, and without turning around, signed back, "YES, YES, YES!!" She heard Mom! No signing, no speechreading, no visual cues....just heard her. Tell me that isn't a miracle of sorts. The second was a boy - just over a year - having one implant was playing in the family room on the floor. Several feet away, Dad was sitting in a chair reading and his stomach growled. The boy went over an poined to Dad's stomach. He heard a stomach growl.... These are deaf children hearing things in their environment.
March 10
Today we have an opthamologist appointment. This is part of the workup for a child with a hearing loss, specifically in Mikaela's range. They are screening for any potential syndromes of which deafness is one of the symptoms.
She has a slight astigmatism - no surprise there - but her vision is fine right now. She will have to be checked annually as Usher's syndrome may present later in life.
She has a slight astigmatism - no surprise there - but her vision is fine right now. She will have to be checked annually as Usher's syndrome may present later in life.
March 8
Well, today is my 39th birthday! Not why I am posting....Mikaela threw up today. Maybe it's a reaction to the formula. We were using Enfamil (yellow container) and I am going to try Good Start. It has those "comfort proteins"....maybe that will help. Ugh...my nerves!
Feb 21 - Dr. Jay visit
This was her four month well visit. Received two vaccines - mainly because I wouldn't let him give her FOUR! I chose to split them up and come back in 30 days for the other two.
She only weighs a touch over 12 pounds. She isn't gaining as much weight as the doc would like to see, so he said I need to supplement. Nurse her first, then give her an ounce or two of formula to promote a bit more weight. Well, that's not happenin'! I am NOT feeding her twice! I'll just begin to wean and switch her over to formula. I am greatful that I was able to nurse for as long as I have.
She is a bit behind in her gross motor development. Doc said her head rocking is okay neurologically. I can't wait to meet with Early Intervention to see what the scoop is!
She only weighs a touch over 12 pounds. She isn't gaining as much weight as the doc would like to see, so he said I need to supplement. Nurse her first, then give her an ounce or two of formula to promote a bit more weight. Well, that's not happenin'! I am NOT feeding her twice! I'll just begin to wean and switch her over to formula. I am greatful that I was able to nurse for as long as I have.
She is a bit behind in her gross motor development. Doc said her head rocking is okay neurologically. I can't wait to meet with Early Intervention to see what the scoop is!
February 20 - Her fitting
Erin tested Mikaela's hearing again prior to fitting her hearing aids to make certain that the first ABR was correct. Her right ear was about 5 dB better than the first one which originally showed no definitive response. This was only at the lowest frequency. Still considered a profound loss in that ear. The left was consistent and remained in the severe loss range.For the first ear molds (as you can see by the picture) we opted for clear molds. Her hair is so long at 4 months that it covers the aid itself and you can barely notice she has aids. In the future, we are going to choose colorful ear molds. Hey, if you have to wear them, you may as well have fun with them. I will let Juliana choose the color after the Baptism. Can you guess what she will choose??? For those of you who know her.....PINK! Due to the rate at which babies grow, we can expect to get new molds about once a month for a while, then it may slow down as her growth rates slows down.
So, Erin puts them in and turns them on for the first time. It was interesting to see Mikaela's response! She furrowed her brow ever so slightly as if to say, "What is that?" Her smile disappeared and a look of complete concentration swept over her face. Maybe she was in wonderment of what she was now experiencing. I will be posting a video here at some point when I figure out how to do that. :-)
Immediately following the fitting appointment, we headed over to Rebecca, her Speech and Language Pathologist. She is a certified AV therapist and at this time, this is the communication approach we think we want to pursue with Mikaela. Of course it will depends on the success she has with the hearing aids and subsequent cochlear implant - if that is the way this goes. There are a few different communication approaches which range from sign language to a blend of oral and sign to completely verbal without the use of any signs. The latter being AV which stands for Auditory Verbal.
Rebecca walked us through several things to help teach Mikaela how to listen and hopefully make sense of the sound now coming in. Some examples are clacking a loud toy out of her vision range to see if she reacts thus letting us know she heard it. A "reaction" may be that she stops sucking on the bink, pauses, blinks, and ultimately turns to see what it is. We will also play the "Ahhhh, Boo" game with a toy. Practice the Ling sounds. The list goes on and on. (Oh, if you aren't sure what I mean by Ling sounds, it is a list of five sounds that make up pretty much the majority of the sounds/pitches we use in the English language. Google it if you are curious! :-)
Due to her age and the progress expected, we don't have to come back for three months. If she was at a point where she was rapidly aquiring speech, we would have more frequent therapy sessions. I suppose we'll get back to this in May!
February 19 - ENT visit
We are scheduled to visit the ENT (Ear Nose and Throat) doctor. Erin recommended Dr. Ken Kazahaya since he most likely would be doing the Cochlear Implant surgery - should Mikaela be a candidate. I wasn't sure what to expect from this visit. Not sure of the purpose.
He did looked in her ears, removed lots of wax and wrote a bunch of prescriptions. The prescriptions were for further tests. When a baby is born with a hearing loss, they test for other things - syndromes - that can occur. She has to have an MRI, her eyes checked, a urinalysis and genetic testing. In my opinion, this was like going to your general practitioner to get the referrals for the other tests/doctors.
He seems like a really great guy! I have heard good things about his surgical abilities. He even likes horses - and has one (maybe more). :-) I am not sure when we go back to him again, but I will call once we have all the tests complete to ask results.
He did looked in her ears, removed lots of wax and wrote a bunch of prescriptions. The prescriptions were for further tests. When a baby is born with a hearing loss, they test for other things - syndromes - that can occur. She has to have an MRI, her eyes checked, a urinalysis and genetic testing. In my opinion, this was like going to your general practitioner to get the referrals for the other tests/doctors.
He seems like a really great guy! I have heard good things about his surgical abilities. He even likes horses - and has one (maybe more). :-) I am not sure when we go back to him again, but I will call once we have all the tests complete to ask results.
January 31
The morning of January 31st, Mikaela woke up kind of gagging at 5:30 a.m. I went in to get her to feed her and she spit up what looked like bile to me. Yellowish, brown. I thought, "whoa...that's not good." Maybe it was her vitamins. But then she was sluggish to wake. Actually she didn't wake up. She was lethargic to say the least. I think I waited until 6 a.m. or so and I called my mom - she's the only one I know up that early. Mikaela threw up two more times. Same color but a very small amount...like a tablespoon or so. I just held her and waited until Dr. Jay' office opened at 8:30. I got an appointment for a sick visit for 9:15. We arrived and upon checking in, Mikaela threw up again. Dr. Jay did a brief examination and turned to me and said, "Okay, I am going to send you back over to CHOP. When the vomit is this color, we have to check for a possible obstruction in the bowel." I was like, "no way!! - You've got to be kidding me!" Dr. Jay is so great!! In his calm demeanor yet telling me to get over there in a hurry, he said, "I'm going to call ahead to let them know you are coming. When can I tell them you'll arrive? In a half hour?" I said, "make it an hour or so. I have to go home, arrange for someone to take Juliana, get Kurt and head over."
I called my mom on the way home and she didn't answer...UGH! Why doesn't she have a cell phone. Where did she go?
So we packed up toys and the DVD player for Juliana to make a day of it at the hospital! As we were pulling out of our neighborhood, my mom was pulling in. Thank God we passed at that moment! If we had left a minute sooner, we would have completely missed her as we go out a different way towards 295! We turned around and dropped Juliana off with all the toys for Nan to hang with her at our house! THANK YOU, NAN!
On the way over, I called my usual prayer chain to let them know to get the prayers going - once again - for Mikaela! This stinks because we were supposed to be having a party for Mom W's 79th birthday at our home this weekend! I had the menu for Tarentella's to place the catering order in my bag!
We arrive at CHOP and I am calm, but just want to get into a triage room. Hanging in the main ER waiting area was getting me agitated. I think it was a mix of the germs and just wanting to know that she was going to be looked at soon. They really did get us back relatively quickly. I would say within a half hour or less, we were in one of the rooms. The good thing about rooms in the ER, you can use the land line phones. :-)
So once again, we tell our story to a half of dozen doctors/interns/nurses. Once again everyone was really, really great! The plan of action this time includes CT scan of her abdomen then possibly a upper GI where she would have to drink that barium stuff. If they find a blockage, they will do surgery to fix it. Of course the hours pass as we wait to have the CT. They took her over and Kurt and I both went in with her. That appeared good. It looked as if there was air all the way through her intestines. Now for the next test. Again, time passes and then we get over to that department. This one, the nurse is moving Mikaela all around as the machine takes x-ray after x-ray. Mikaela only has to drink a few swallows of the barium and I can see it all balling up. There's the blockage...I see it on the screen. The doctor tells the nurse to roll Mikaela left, then right, then left, then right again. I guess they were making sure that the barium was really not going to make it down any further to confirm the blockage and to get enough pictures for the surgeon.
So the surgery team tells us that what she has is called Malrotation. Low and behold, when a baby is in eutero, her intestines come out of her body into the umbilical cord for other organs to develop. Around week 10 the intestines turn around and go back into her body. If they do not go back in correctly, it is called Malrotation. Malrotation in and of itself is not the problem. The problem lies in the intestines twist upon themselves. This is called volvulus. It almost always has to be corrected by surgery.
Now I had to make calls to Dad and Chris again to see if they could head down and pick up Juliana and keep her for a few days. Who knew how long we would be the hospital post surgery? Thank God, Chris is able to miss work. I am really lucky to have family and a tremendous hospital so close! I don't know what people do who live far from their support network!
So, Dr. Nance was going to finish the surgery he had scheduled already and Mikaela would be after that patient. Her case was not so life threatening that a couple hours would not increase any risk. Here we go again with the whole IV thing! This time was much better because CHOP has better equipment for infants and children than Voorhees has. Not to mention they are used to finding those tiny little veins.
The surgery, called a Ladd procedure, was complete in about a half hour. It seemed like and incredibly long half hour, but all went well! Again, THANK YOU, GOD!! Dr. Nance told us the tube that attaches the stomach to the small intestine is usually shaped like a "C". Mikaela's was shaped like a corkscrew. The blood supply was good, the rest of the intestines were all good and she should be just fine! Her small intestines now lie on the right side of her body and her colon on the left. They also take out the appendix during this procedure because it would be in the wrong place when they put everything back in. Therefor making an appendicitis very hard to diagnose.
After surgery, Mikaela had an NG tube in to drain the contents of her stomach and depress any gas from the surgery. She was out of it for a good 12 hours. However, everything was draining well. At one point, they were going to take the tube out but by the time they came back to do so, more was coming out so I asked them to leave it in a bit longer. She was still groggy and didn't know the difference.
All of the staff was wonderful. I really like all of the nurses over there! The bummer is that some recognized us from our last visit! Not really the place where you want 'everyone to know your name'. I'd much prefer to be recognized at my local pub!
The 'big wait' now was for her to move her bowels. Once she could do that, I could start feeding her again. First we had some toots! It was so funny...one of her nurses said, "My, oh my! You are tooting like a Frat Boy!!" I love a little levity in tough situations! I must say, I think she did end up moving her bowels in less than 24 hours after surgery. Everyone was surprised and thrilled. That can often take up to 2 or 3 days.
She was coming along quite nicely! She was pleasant like her usual self in a very short time. What a doll baby! She is such an angel! Always smiling even through all this junk!
Now she could start to eat! We started out slowly. Just two ounces per feeding. We kept that up for three feedings or so and then we increased to her regular amount! We couldn't have been more pleased with the outcome. We were even hoping this would help the acid reflux.
Mikaela was discharged on Sunday, Feb. 4th and we were home in time for the SuperBowl!
I called my mom on the way home and she didn't answer...UGH! Why doesn't she have a cell phone. Where did she go?
So we packed up toys and the DVD player for Juliana to make a day of it at the hospital! As we were pulling out of our neighborhood, my mom was pulling in. Thank God we passed at that moment! If we had left a minute sooner, we would have completely missed her as we go out a different way towards 295! We turned around and dropped Juliana off with all the toys for Nan to hang with her at our house! THANK YOU, NAN!
On the way over, I called my usual prayer chain to let them know to get the prayers going - once again - for Mikaela! This stinks because we were supposed to be having a party for Mom W's 79th birthday at our home this weekend! I had the menu for Tarentella's to place the catering order in my bag!
We arrive at CHOP and I am calm, but just want to get into a triage room. Hanging in the main ER waiting area was getting me agitated. I think it was a mix of the germs and just wanting to know that she was going to be looked at soon. They really did get us back relatively quickly. I would say within a half hour or less, we were in one of the rooms. The good thing about rooms in the ER, you can use the land line phones. :-)
So once again, we tell our story to a half of dozen doctors/interns/nurses. Once again everyone was really, really great! The plan of action this time includes CT scan of her abdomen then possibly a upper GI where she would have to drink that barium stuff. If they find a blockage, they will do surgery to fix it. Of course the hours pass as we wait to have the CT. They took her over and Kurt and I both went in with her. That appeared good. It looked as if there was air all the way through her intestines. Now for the next test. Again, time passes and then we get over to that department. This one, the nurse is moving Mikaela all around as the machine takes x-ray after x-ray. Mikaela only has to drink a few swallows of the barium and I can see it all balling up. There's the blockage...I see it on the screen. The doctor tells the nurse to roll Mikaela left, then right, then left, then right again. I guess they were making sure that the barium was really not going to make it down any further to confirm the blockage and to get enough pictures for the surgeon.
So the surgery team tells us that what she has is called Malrotation. Low and behold, when a baby is in eutero, her intestines come out of her body into the umbilical cord for other organs to develop. Around week 10 the intestines turn around and go back into her body. If they do not go back in correctly, it is called Malrotation. Malrotation in and of itself is not the problem. The problem lies in the intestines twist upon themselves. This is called volvulus. It almost always has to be corrected by surgery.
Now I had to make calls to Dad and Chris again to see if they could head down and pick up Juliana and keep her for a few days. Who knew how long we would be the hospital post surgery? Thank God, Chris is able to miss work. I am really lucky to have family and a tremendous hospital so close! I don't know what people do who live far from their support network!
So, Dr. Nance was going to finish the surgery he had scheduled already and Mikaela would be after that patient. Her case was not so life threatening that a couple hours would not increase any risk. Here we go again with the whole IV thing! This time was much better because CHOP has better equipment for infants and children than Voorhees has. Not to mention they are used to finding those tiny little veins.
The surgery, called a Ladd procedure, was complete in about a half hour. It seemed like and incredibly long half hour, but all went well! Again, THANK YOU, GOD!! Dr. Nance told us the tube that attaches the stomach to the small intestine is usually shaped like a "C". Mikaela's was shaped like a corkscrew. The blood supply was good, the rest of the intestines were all good and she should be just fine! Her small intestines now lie on the right side of her body and her colon on the left. They also take out the appendix during this procedure because it would be in the wrong place when they put everything back in. Therefor making an appendicitis very hard to diagnose.
After surgery, Mikaela had an NG tube in to drain the contents of her stomach and depress any gas from the surgery. She was out of it for a good 12 hours. However, everything was draining well. At one point, they were going to take the tube out but by the time they came back to do so, more was coming out so I asked them to leave it in a bit longer. She was still groggy and didn't know the difference.
All of the staff was wonderful. I really like all of the nurses over there! The bummer is that some recognized us from our last visit! Not really the place where you want 'everyone to know your name'. I'd much prefer to be recognized at my local pub!
The 'big wait' now was for her to move her bowels. Once she could do that, I could start feeding her again. First we had some toots! It was so funny...one of her nurses said, "My, oh my! You are tooting like a Frat Boy!!" I love a little levity in tough situations! I must say, I think she did end up moving her bowels in less than 24 hours after surgery. Everyone was surprised and thrilled. That can often take up to 2 or 3 days.
She was coming along quite nicely! She was pleasant like her usual self in a very short time. What a doll baby! She is such an angel! Always smiling even through all this junk!
Now she could start to eat! We started out slowly. Just two ounces per feeding. We kept that up for three feedings or so and then we increased to her regular amount! We couldn't have been more pleased with the outcome. We were even hoping this would help the acid reflux.
Mikaela was discharged on Sunday, Feb. 4th and we were home in time for the SuperBowl!
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