Could it be? 2015?

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Here’s my usual New Year’s resolution to start blogging more. It should be relatively easy since I haven’t had a non-Instagram post in the longest time.

I know it’s probably a big obvious observation but I have changed a ton since Justine has been around. I like to think I am more responsible and that I think things through a little more. Continue reading “Could it be? 2015?”

Long overdue

 

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This post is long overdue…

I am laying in bed, with Justine in a sleeper bed between me and Jaz…at home. It has now been 61 days since we left Lurie’s Children hospital’s NICU to be back home with Justine. In that time Justine no longer needs her NG tube, she has doubled her weight, and continues to catch up on her developmental milestones.  I can’t help be thankful, take a step back, and look where we are and where we have been.

Since she was in a hospital the first 47 days of her life Justine didn’t have a chance to learn what other babies learn during that time. She was too busy getting EEGs and blood drawn. Poor thing. Starting a couple of weeks ago we started a state program called “Early Intervention”. This program provides different therapy for children who had a rough start like Justine. Two therapists have been coming by every Friday to work with her and track her progress. She has made some leaps and bounds since her first evaluation and we are praying that continues.

On to the seizures. Justine had a genetics test done while she was still at Lurie’s hospital and since it is such a detailed and comprehensive test, it took a few months to receive the results. Last week Justine’s neurologist told us the results. Justine has a mutation in one of the potassium channels (KCNQ2) that is known for causing benign familial neonatal seizures. However, she also has a mutation in a second potassium channel (KCNQ3). According to our neurologist, the kind of mutation in these two channels nor the combination of BOTH mutations in the two channels has been seen before in her research. Justine might quite possibly be the first one to have this rare condition. To try and find out more about why she had this, Jaz and I will both be getting the same genetics test as well to see if either of us have these mutations in our genes as well. Other than that, Justine has been great in that department since being home. *knock on wood*

Unfortunately, acid reflux and stridor continue to be an issue with Justine. Every so often (1-3 days) she will spit up an entire feed. Like today, we fed her at home, waiting for about an hour, went to Buffalo Grove Days, and she throws up in her stroller. You can tell when she is experiencing it because she arches like crazy, cries like crazy, and can very rarely be comforted. As much as I hate pumping her with medication, but I’m guessing it might be time to bump up her anti-acid reflux medication (Prilosec).

Although there are some hurdles we still have to get past, I thank God that we have been able to be home with her instead of at the hospital. We have seen such love and support from all of the doctors and nurses at both Northwest Community and Lurie’s Children hospitals. The company I work for (Protective Life) took up a collection for our family to help with medical expenses totaling up to almost $2000. The Ronald McDonald house was our home for a month and helped us deal with the situation we were in. They gave us a (very comfortable) bed to sleep in and their volunteers fed us every single day. And of course I thank God for our friends and family that continued to pray day after day for Justine. It was very comforting knowing that Justine was on everyone’s minds and hearts throughout the day. We knew the day she went home would bring joy to so many people, and it truly did!

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Justine update – 6/19

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I needed a break from logging everything that has been going on with Justine because it was starting to drive me crazy. I know that there is definite benefits of me keeping track of everything but it would make me sad writing them sometimes. Anyways here is an update on what has been going on.

Seizures:
A couple of days ago the neurologist added a third seizure medication to her daily meds: Dilantin. They gave her a loading dose on somewhere around 60-70mg on the 17th and have been giving her maintenance doses 3 times a day thru her new IV. Today the neurologist is going to bump it up to 4 times a day as they believe her Dilantin levels are not at an optimal state. She will be having another 24 hour EEG to see if the Dilantin is really doing anything effective. If not, they will probably stop it.

Airway/stridor:
Justine hasn’t dropped her oxygen in a few days now. So it seems that her airway is getting bigger as she gets older.

Feeding:
Her eating by mouth is improving. We have had a few days now where she has taken the bottle multiple times in a day and she takes in anywhere from 15mL to 40mL at one time. That is incredible progress.

Us:
On the 17th Justine celebrated her first month of life in the NICU at Lurie’s Children’s hospital. Not necessarily what all parents hope and dream for. But she is getting the best care that a hospital can provide, and that is something that a parent can hope for. It has been a very bumpy and scary road the past month and we are praying that we will be able to control the seizures through medication and that she continues to progress to feed successfully over the next couple weeks so she will take the entire feed.

Thank you to everyone who have been there for us the past month. We could not get through this all if it weren’t for the prayers, love, and support from our dear friends and family.

Justine – 6/12

Visitors: Papa (Buddy), Mom (Remy), Jun, Jay, Chloe, Alyssa

Weight – 7lbs 3oz

5pm – It was my turn to try an feed her. She seemed to be super comfortable while she was feeding. She only ended up getting like 2mL because she was still a little riled up from the physical therapy. I didn’t want to force her to eat so I pulled back when the stridor started acting up.

4:15pm – Physical Therapist came in to see how Justine would do on her feet and sitting up. It was super cute when the therapist lifted her up and she tried to walk and step on her own. The PT said she did well and did what she had hoped.

3:30pm – Nurse Amanda showed us how to perform CPR on an infant. 30 compressions and 2 breaths. We are thoroughly terrified.
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2pm – Jaz was able to feed her 15mL by bottle and she took the rest thru the NG tube.

11:30am – Speech therapy came in to see how she was feeding. She ended up taking 20mL. The therapist said we can increase her feeds by bottle to 30mL three times a day, and the rest will be NG tube fed. She said we will probably do the swallow study next Monday to give her more time to practice feeding with the bottle.

8am – called NICU to see how Justine did last night. She did have one seizure last night. Her oxygen level did not drop enough to have a nurse administer an oxygen mask.

Justine – 6/11

4pm – seizure #3. The tech was actually prepping to remove the EEG nodes off of her head and she seized.

3pm – seizure #2.

12:40pm – seizure. Lifted up her neck and started crying with eye deviation. Oxygen dropped to 79 but she was able to recover on her own. No mask was needed

8am – called NICU to check on Justine. She didn’t have any episodes during the night.

Justine – 6/10

Visitors: papa (Buddy), Jessica, Mylene, Arlene, Jean, Jun

Weight – 7lbs

9:30pm – night watch with Jaz and Justine during the 24 hour EEG
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7pm – it was decided earlier that we would have the 24 hour EEG tonight instead of starting tomorrow morning so I will be staying later to help monitor her.

3pm – seizure #3. According to Jessica she was holding her and had a seizure, but it was very short. By the time the nurse came in she was almost fully recovered.

1:10pm – seizure #2. I was holding her thru her 12pm feeding and then for a while after that. I handed her to her mom and then seizure. It was a pretty short one and her oxygen didn’t dip either.

12:15pm – A nurse practicioner and Dr Collins came by to talk about what is next for Justine. Tomorrow she is going to have another 24 hour EEG and they want me to stay as long as possible to tell then when I think she is having a seizure. That may be tough, but I gotta do it for her! Also on either Wednesday or Thursday she will have a swallow study performed by speech therapy. They want to see how she is taking her food by bottle. It does not sound like ENT is going to do anything more at this point. It sounds like the problem at this point is the acid reflux. And sometimes the reflux episodes look like seizures. We will help determine that thru the video EEG.

12pm – arrived at NICU to find that Justine had occupational therapy in the morning and she did well. Speech therapy also came at 10am to feed her with a bottle. She took 15mL before they stopped – about how much they want her to take.

8am – Called NICU and most everything went fine. She did have one seizure at around 3am. No oxygen was needed.

Justine – 6/9

Visitors: Papa (Buddy), Jessica, Art, Becca, Brandon, Marlon, Theresa, Jun

6pm – I changed the NG tube on Justine. It really wasn’t as bad as I thought it would be. I just wanted it to be over the whole time. It only took 5 minutes to do. Hopefully we become better at it so we are one step closer to coming home.

5:45pm – seizure #2. I was holding her during a feeding and she started having a seizure, so I put back on the bed and she actually recovered pretty quickly.

2:30pm – seizure. Jaz was holding her after a feeding and she seized.

12pm – Justine had some problems breathing when we walked in while Jaz’s dad was visiting her. They were administering a nebulizer to help with the swelling of her airway. Shortly afterwards the nurse practioner and Dr Murthy came to talk to us. They did not see any reason to do anything more because Justine didn’t sound like there was any blockage or anything in the upper airway.

8am – called NICU to check how Justine did last night. The nurse said she did fine last night – no seizures or oxygen dips.

Justine – 6/8

Pictures:
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Visitors: Mom (Remy), Papa (Buddy), Jessica, Jay, Rochelle, Chloe, Alyssa, Tony, Eli, Diana, Noel

7:45pm – Seizure #3. She had been awake for a while now after her feed and was getting a little agitated, so I decided to try and change her before we left and she had another seizure. Probably one of the louder cries she has let out in a while. Oxygen dipped again to the low 80s.

4:50pm – Seizure #2. She was just sleeping, while Jessica was watching her then suddenly woke up and went into her seizure. Oxygen dipped to about 78 and blow by oxygen was administered to help her recover quicker.

3pm – After the nurse did her assessment I fed her her bottle. She had the whole 30mL bottle again. She didn’t sound wet at all and she was very comfortable through the entire feeding. She slowed down a little bit at the end so I took out the bottle and burped her.

11:50am – Seizure. As she was waking up to get fed, she had a seizure that seemed like it took a long time to recover from because of the stridor. Probably close to a 2 minute recovery. Her oxygen did dip to about 68 and blow by oxygen needed to be administered.

6:30am – Jaz called the NICU and they said there were no episodes last night after we left.

Justine – 6/7

Pictures:
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Visitors: Papa (Buddy), Mom (Luchie), Erick, Abby, Annie, Eli, Tita Ging, Melissa, Cassie, Xander, Jun

6:45pm – Seizure #4. During the remainder of her feed through the NG I was holding her and she seized again. Oxygen dropped to 70s again and needed blow by oxygen to recover because her lips turned a little blue

6pm – Jaz fed her 15mL from the bottle. She did really well pacing her but at the end her stridor started to sound a little wet so we stopped.

5:20pm – Seizure #3

4pm – Physical Therapist Cheryl came in to talk to Jaz and I about some of the things we can work on with Justine when we take her home – specifically “tummy time” so she can learn more coordination and play. It was quite an interesting conversation as it was things I honestly never thought about.

3pm – Speech Therapist Holly came in to feed Justine after she was changed and assessed by the nurse. She did well, and took down 18mL before sounding like the stridor had gotten a little “wet”. The concern here is that she may be aspirating some of the formula into her lunds which we obviously do not want. She took the rest via NG tube.

12pm – NG tube feeding since she just had the spinal tap.

11:30am – Nurse Lara and NP Chris performed spinal tap and was finally successful at getting some spinal fluid. They said it was clear, which is a good sign. Finally after the third time they were able to get spinal fluid from Justine!

11:15am – NP Chris came in to tell us that she will be administering the spinal tap in about an hour or so and it should take about 45 minutes to setup and perform along with some blood tests.

11am – seizure #2. Of course just when we walked in she was just recovering from a seizure. Her HR went up to the 190s but her oxygen dropped to about 85 but no oxygen mask was needed.

7:30am – Called the NICU to see how she did last night. She did have one more seizure last night right after we left around 7:45pm. And then she had another one this morning a little before I called at 7:15am. It took her a little work to recover from that one. The nurse said she had to administer blow by oxygen to recover since she dipped to about 68. So for those keeping count, 2 days ago she had 6 seizures and yesterday she had 5 seizures.

Justine – 6/6

Pictures:
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Visitors: Papa (Buddy), Mom (Luchie), Mom (Remy), Jay, Rochelle, Chloe, Alyssa

Moment of the day: The chaplain came in to pray with/for us. She gave Justine an extremely touching blessing and we prayed the Our Father and Hail Mary prayers a couple of times. The three of us blessed some water which we then put on Justine. Justine was completely still this entire time, and very calm. I could tell this prayer was doing its work. And then sure enough, about 10-15 minutes later, she fed from the bottle from me and finished the bottle. So…incredible.

The rest of the night – I didn’t get to get times of everything else that happened:

The neurologist came in to tell us about updates on the MRI/EEG. As we found out earlier, the MRI looked normal for her age. The EEG still showed the same “abnormalities” that they observed from earlier EEGs. The neurologist did want to do a more thorough workup on Justine so tomorrow morning she will have another spinal tap as well as blood drawn for a wide array of blood tests including a genetics test.

She also went through some physical therapy right before her 6pm feeding. She did pretty well on her tummy time. By the end of physical therapy she was pretty upset. It was near impossible to console her. She finally had a seizure during her feeding. I don’t remember exactly what time. She then calmed herself down and then stayed awake until we left.

3:20pm – Seizure after burping.

3pm – 30mL by bottle! She would have taken more if we didn’t run out. I was so happy!
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2pm – seizure #2

12:50pm – seizure. After she was done with her feeding.

12pm – Another attempt at bottle feeding without success. She just wanted to snuggle and Jaz was fine with that.
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11:30am – Dr. Collins paid us a visit with NP Mimi and they said the MRI looks normal for a baby of Justine’s age. The brain is obviously still growing but according to the neurologist, everything looks good. Thank God! EEG results still pending. For now they are going to stay with the topamax along with the phenobarbital. Like us, we thought it was working well because the first day she had no seizures. But then yesterday she had six. They said it is too early to tell if it is not working so we will wait on it a little more. Regarding the feeding, they do want to go ahead with the swallow study with the speech therapist next Monday. They just want to know if there is anything going wrong when she is trying to eat. I expressed our frustration about being here for 2 weeks with no substantial amount of progress other than the surgery. They expressed the same frustration but reiterated that they will not send us home until we know definitively that she is safe. The neurologist should be here later today and may come by to talk again.

7:30am – Called the NICU to get an update on Justine. She did have another seizure at around 1:45am last night. Bumping her total up to 6 in the past 24 hours. Poor thing. They are administering her EEG right now. It did not sound like they were going to do a 24 hour one again, so by the time we get there hopefully they will be done.