Confessions from the mind of this sleep deprived mom navigating the world of complex medical needs, deafblindness, and special education. And y'all, it may not always be pretty, but it's real, and it's always for the love of Ivey.
We miss our daughter; they miss their sister; we long for our family.
Today Ivey's homecoming was stalled for one more day. We guestimate that she will now come home on Thursday, but do not be suprised if it turns out to be Monday. The hold up revolves around our nursing service. Nurses just are not available for our area. Amazing, we live in a town with two great hospitals and a nursing school and there is a shortage of nurses. So, if anyone out there is interested or knows someone who is interested in pediatric home health care, I would love to send you information to contact our agency. We seem to be stuck at square one.
Matt really wanted me to share our good news with all of you. I am not quite sure how to word this so you experience our excitement about today's events with Ivey. I know that I have mentioned this, but I have not spent much time on it. With the trach, Ivey no longer makes sound. The air to her lungs is rerouted; therefore, the air do…
Didn't I say that things are subject to change without discussion or warning when it comes to Ivey? Well, put a great big X through Tuesday and circle Wednesday. She should be released from the hospital and on her way home in another 48 hours. That's the plan.....
The doctors feel that she is ready. After a long emotional stay, Ivey has benefitted from her hospitalization. The paralytic that she was under in the beginning of her stay seems to have loosened her up a bit. Ivey has alot of tone. Unlike most babies who are pretty floppy, Ivey's muscles are tight and her range of motion is extremely limited. Now, her muscles have relaxed emensly. I think Ivey's physical therapist will be extremely happy with the results.
Ivey's lip and nose look beautiful weeks after the cleft repair surgery. We are to assume that she will return in about three months for the surgery on her palate. A surgery that will require another hospitalization.
Knox, Walker and I woke up this morning to a Thanksgiving Day unique unto its self. Unlike years prior, they are not waking up together with their Dad or walking into a baby's room to celebrate the first Thanksgiving Day. After a tough year, thankful is an understatement to describe the joys we/I appreciate this year. For the first time in 31 years I realize that I do not need a single day to remind me of my blessings or a special day to celebrate those blessings. Here lately, I have hit my knees in my own solitude and praised God for all of my blessings without a date on a calendar to remind me to take the time. It has not taken a special 24 hours to remind me how thankful I am for my family. I hit my knees almost daily and rejoice in the friendship that surrounds me and my family. Today, I will celebrate the fact that I do not need an exclusive day to be thankful that I found my best friend to walk through life's joys and its curve balls. I will embrace today and in its full…
Father Peter: Shrugging his shoulders and smiling. "Close enough."
God definitely has a sense of humor and pretty good timing. For this post I will refer back to my list among lists in my little notebook that I carry with me always.
Thursday, October 26th Pre-op for Day Surgery and Craniofacial appointment-
After a long day of registering Ivey for her surgery on her cleft lip, the only surgery officially scheduled at the time, it was time for dinner. We decided to take Ivey out-on-the-town for a little surgery celebration. Remember we are early birds; it was only 5:30 pm. After little haggling over restaurants, we (Matt) suggested that we eat at Matt's favorite restaurant, Bones. Who was I to disagree? It is delicious.
Ivey loved her night out. She celebrated by sleeping through the entire dinner. Seemingly, she knew when dessert was over, she started to stir and get a little fussy. Like two polite l…
Time with Ivey and two little boys has become more complex, more relaxing, full of fear and estatic with joy in just a short three weeks. And right this moment, all three are sleeping peacefully and there is a moment to sit and breathe.
I am here at the hospital with Ivey watching her sleep yet, still wishing that I could stand in the boys' doorway to watch them sleep.
Next week on the 25th, Ivey will be 7 months old. Officially, she will have spent 2 months of her 7 in a hospital. Each day that has passed in those two months, Knox and Walker have whole heartedly stepped through each day with her. Not a day has gone by that they lift their heads from their pillows, bare feet hitting the hardwoods and ask where is Ivey, where is Daddy? And instinctively they answer their own question - at Scot White with Ivey. And in return, Matt says the same is done on the days I am here with Ivey, except they ask about their Momma. Not a day has passed that I don't ask, not necessarily to anyo…
I just received this email from a friend. How it got to her, I am not sure, but she passed it on to me.
I will preface this email by telling you that Ivey has brought joy to many many many people. Her life has been a miracle, in so many infinite ways. = Hearts have opened, hearts have mended, friendships created, friendships renewed, a community united, priorities aligned, love established.-Yes,life is hard at times. And for me, I want Ivey's story told, all because I see that she is a Brave Little Soul. There isn't a relationship in my life that hasn't been made more valuable all because of Ivey. I will mention that everything is not always light hearted, my mom and husband normally endure the convergence of life, fear and reality and when I subcome to the three. Sometimes, life and reality merge and become too much. When I touch Ivey and my sons all fear disappears. But maybe, just maybe, the world is more compassionate all because of the presence of babies and children l…
This morning Ivey underwent another procedure. The GI doctor placed a PEG tube into the wall of her stomach. Now instead of having a ng tube (feeding tube) run through her nose into her stomach, her feedings will be supplied through the PEG tube directly into her stomach. After six months of tape on Ivey's face holding a feeding tube in place, she is FREE! No more tape, no more tubes, no more irritated skin, and one less object in her sweet face. This morning I watched her hook her right index finger under the tube and pull it out for the last time! Yeah. I just sat back, watching, and said, "Ivey, you get to do the honors."
She is sleeping now. Our nurse, Hannah, assures me she will not wake up happy, nor will she be for the next three days. On the bright side, we hope to have simplified Ivey's feedings.
Have you ever felt like your life were a TV script. If we had to choose one right this very moment it would be Gilligan's Island.
As of this very moment, Ivey is doing well. She is back on her normal medications with a couple of new ones added to the batch. She is gradually adjusting to her new trach. When it comes to her feedings, she is still taking them via her feeding tube which runs through her nose to her stomach, something she has had since day 1, literally. And as we have come to accept, it is always one step forward about twenty steps back. Ivey is on a continual feed where the feeding pump runs continually for 5 hours; she rests for one hour, then it all starts over again. Somewhere in there a good case of reflux occurs. This is where the trach adds a little excitement to our normal routine. The trach must be suctioned, dressing and trach ties normally must be changed; and not to be forgotten, her bedding and clothes must also be changed, unless I am holding her, then we both need changing. All of this probably would not be quite so dramatic if not for the PIC line in her arm, something to be guarded a…
I am learning all sorts of abbreviations these days. For example, TICU is the technology-dependant intensive care unit. Wednesday, the nurses and doctors put the word out that Ivey was heading there. Miranda and I sat trying to decide what the ‘T’ in 'tick-u' stood for. We concluded that it stood for ‘Temporary’, which sounded pretty optimistic to both of us. In my phone call to Matt to tell him the good news about Ivey’s move, he informed me of the correct meaning, technology-dependant.
What more could you expect from two blondes brain-storming anyways?
So…Ivey has moved one floor down - one floor closer to the exit of the hospital - to TICU, a step-down unit. She is no longer on the respirator. Our sweet baby girl is breathing all on her own through her new trach. Ivey is connected to a HTC, another abbreviation which stands for humidified trach collar. A hose extending from a humidifier to her trach supplies moisture to keep her airway from drying. Since she no longer breathe…
Ivey is doing well this morning. Yesterday, Ivey had her trach changed out for the first time. The paralytic was also stopped at this time.
She is beginning to move her arms, push with her legs and just wiggle around a little bit. She looks very pouty because she is rolling her lower lip out feeling that new upper lip. Last night she did take a pacifier. Her sweet personality is coming back.
The next few days will be interesting for her as she learns and accepts the trach and her new lip. She is still on the ventilator; however, she is not depending on it quite as much.
Keep Ivey in your prayers. Add to your list all the children in this hospital with Ivey, and their parents and siblings. Gwen